A few weeks ago I had the amazing opportunity to be a keynote speaker for the afternoon session at the Asperger Autism Spectrum Education Network (ASPEN) Annual Conference in Iselin, New Jersey. The title of my speech was “Overcoming Obstacles: From Nonverbal to National Speaker.” In the presentation I discussed my diagnosis and what it has meant to me in my life until this point. In addition I went through topics such as transitioning to adulthood, finding fulfilling employment, how to succeed in college with a disability and much more. It was a “Wow” experience for me, made even more so by the “opening act” I followed that truly blew me away.
The morning of the conference I was pleasantly surprised to hear that Jerry Newport was also speaking. Jerry is an amazing self-advocate, now 65 years old, who was diagnosed with Asperger’s. He is a much sought after public speaker on autism-related topics nationwide, able to do complicated mathematical calculations in his head. The film “Mozart and the Whale” was adapted from one of the books he has written.
I was finally getting to meet one of my idols in the autism field! It wasn’t until he started his presentation that I realized how humbling an experience it was to be there. It made me think even more about the people I look up to in our community. Self-advocates such as Stephen Shore, Dena Gassner, and Temple Grandin among others are paving the way for our autism movement and up-and-coming self-advocates out there.
Almost halfway through Jerry’s presentation one of my college advisors who had come with me to the conference passed me a note. It said that my career was just beginning and that I should learn from these individuals as much as possible moving forward. With that advice, I decided at the end of the presentation to ask if I could take a photo with Jerry and exchange contact information. Since then Jerry and I have engaged in dialogue that I’ve found helpful to my work in autism advocacy.
Although I was very nervous to meet Jerry, I hope that by sharing my experience I can encourage other individuals in our community to always try to overcome any anxiety and seize opportunities to move forward. Some situations may be harder than others, but don’t lose hope of what you want to do in this life. Always put your best foot forward everyday and you will never be disappointed in yourself for your efforts.
So, Jerry, thank you for giving me the opportunity to meet you and I look forward to building a friendship with you in the future! I hope from what we can discuss we can make huge strides to benefit the future generations of Jerrys and Kerrys out there.
Autism families are accustomed to facing enormous obstacles securing recognition and services for their children. But not all families face these obstacles in the same way or to the same degree. While each individual autism case is unique, making generalizations difficult, there is a growing recognition among experts that ASD children from minority backgrounds face unique ethnic and racial barriers from the start, barriers that tend to compound over time. For example, according to the Centers for Disease Control and Prevention (CDC), minority children on average receive an early diagnosis three to five years later than Caucasian children with ASD do. That means many simply miss the critical intervention period in which the development of stronger cognitive and communication skills could make a real difference in their ability to function more independently in adulthood.
Latino ASD children and adults appear to face some of the worst group barriers. In addition to ethnicity, these barriers may include language and legal status (some 20 percent of the 53 million Latinos are undocumented, while 26 percent of those here legally are non-citizens, limiting their access to public assistance). Latinos in 2001 surpassed African-Americans as the country’s largest minority group (13 percent then, 17 percent now) and with relatively high birth rates, and ongoing immigration, are expected to become nearly 30 percent of the nation’s population by 2050. (In fact, Latinos already comprise a disproportionately high share (25 percent) of American children under 5). That means their share of the total autism population is growing exponentially; it also means that the potential impact of under-diagnosed Latino autism for Latino adults—and for American society as a whole—is growing rapidly, too.
The challenges Latinos families living with autism face derive from multiple sources. It’s tempting for many public health professionals to couch the issue in terms of poverty, lack of education and low health awareness among Latino families, especially if they’re immigrants. Those Latinos that do immigrate from abroad often come from countries where autism is too often lumped under the broad category of “mental retardation” or confused with other intellectual disabilities. And if specialized diagnostic and treatment services for autism are available at all, generally only a wealthy few can access them. That means Latino immigrants especially have an enormous amount of catching up to do—and often, unless they arrive with their children early, and get a proper diagnosis—they may miss the critical intervention period.
The Impact of Cultural Difference
But even American-born Latinos, it turns out, may fare no better than their immigrant counterparts. Sandy Magaña, a professor in the Department of Disability and Human Development at the University of Illinois at Chicago, has been studying Latino ASD families for years. Her research has shown that Latinos aren’t included in clinical trials for autism in proportion to their numbers, and that even the diagnostic instruments used by clinicians fail to take into account cultural differences in the perceptions of Latino mothers that affect the way that they might report a potential disability or development delay in their child. Unless clinicians are Latino themselves, or have a high degree of “cultural competency” they may not realize that the “difficult” child the mother is describing actually has autism, Magaña’s research shows.
Ethnic and racial health disparities—a polite word for “institutional racism” or “discrimination”—appear to affect Latinos with ASD at every stage of their development, compounding the problems first encountered in childhood. For example, what happens when under-diagnosed autistic Latino children enter the public schools? “To be honest, they get royally screwed, there’s no other way to put it” says Jan Blacher of the University of California at Riverside, another Latino autism expert. Blacher’s the only US health researcher thus far to study Latino children with autism over time through a series of longitudinal studies funded by the National Institutes of Health (NIH). She says that most Latino parents don’t obtain the critical special needs support (including all-day behavioral aides) that non-Latino parents do, in part because they simply don’t realize that such support is available. But even when they do, public authorities may not be amenable to accommodating them, she says. And in the face of institutional resistance, these parents are rarely sufficiently organized to demand that the schools comply with the law the way many more affluent non-Latino parents do.
Data from California, home to nearly one-third of the nation’s Latino population, and the first state in which Latino numbers are roughly equal to those of Caucasians, seem to bear out Blacher’s blunt assessment. Under state law, public monies for autism services, many of them school-based, are managed through 21 regional non-profit centers. However, at 14 of these centers, spending on Caucasian children still far surpasses spending on Latino children, according to a review of the most recently available data conducted by the Los Angeles Times. At the regional center that serves Los Angeles County, for example, spending on Caucasian youngsters with autism averaged $12,794 per child in 2011 compared to $4,652 for Latinos, or almost three times as much, the Times found, despite state guidelines mandating that spending on autism and other disability services be distributed equitably. Contacted by the Times, a spokesperson for the Los Angeles center refused to comment on the data or the newspaper’s report.
The Role of the Family
How much of the responsibility for disparities might lie with Latino families? That’s a matter of considerable dispute. Some multicultural experts say that Latinos are sometimes overly fatalistic about their life circumstances, or are afraid to acknowledge that their child has a serious problem in front of other family members for fear of being blamed or judged for their child’s condition. That may limit their willingness to fight for better services, they say. Magaña agrees, in part, noting that many first-generation Latinas still suffer from a “martyr” complex which consigns them to a more traditional family role as the self-sacrificing housewife and mother. But that doesn’t mean these mothers won’t fight for their children—just the opposite, she says. She also notes that “Latino families, unlike Anglo families, don’t generally think in terms of how to launch their ASD young adults into careers and marriages outside the home.” Instead, according to Magaña, because Latinos tend to prioritize family unity and solidarity across several generations, “they fully expect to take care of their children in perpetuity, if need be.”
Raul Escobedo, now 29, is a good example of an ASD adult with severe autism who still lives at home with his parents and two younger sisters. Born in Mexico like the rest of his family, Raul was lucky to receive an autism diagnosis at age 3 after his parents decided to borrow the money to fly to Chicago on a tourist visa to see a specialist after realizing that quality care for Raul simply wasn’t available in Mexico. Once their suspicions were confirmed, the family then took another bold step: They decided to remain in the US illegally, largely to ensure that Raul could get better care, even at the risk of being arrested, jailed and deported.
Raul’s sister Gissel, who was also born in Mexico and accompanied her parents and Raul to Chicago, says the entire family, including her younger sister, are actively involved in taking care of her brother. Despite his early diagnosis, Raul never developed effective social and language skills but did receive a minimum of special education support in the public schools (just 30 minutes weekly) until he started having violent episodes (or “meltdowns”, as she calls them). Gissel says the episodes occurred every hour and lasted for seven years, beginning at age 15. The daily burden on her entire family was enormous, she says. However, even now, at age 26, Gissel, who has a Master’s degree in Education from the University of Illinois at Chicago, has trouble thinking of her own future independently of her brother’s daily care issues. “I don’t know how I am going to balance, for example, my professional life with him,” she says. “And I’m not even thinking about a married life at this point. The truth is, we’ve never sat down as a family and talked about the future. We live moment to moment and just cherish all the time we have with Raul. We are a very united family.”
In Gissel’s view, the biggest obstacle Raul faces is his legal status. While she’s recently qualified for Deferred Action for Childhood Arrivals (DACA) under the Obama administration's provisional legalization program for the children of undocumented immigrant parents, her brother—and her parents—are still in legal limbo. And even with provisional legal status, under current rules and without a more comprehensive legalization plan, Raul still won’t qualify for a day program, much less for assisted group living or another potential out-of-home solution, she notes. “He might not be able to work or earn a degree, but he still has the ability to learn, and to contribute, instead of just stagnating,” Gissel says. Right now Raul is strictly homebound, except for emergency hospital visits. In fact, the family doesn’t even drive to the park, much less take family vacations, for fear of being detected and possibly deported. Gissel’s father still doesn’t have a driver’s license, but may soon be eligible for one after the state legislature passed a law overturning the former ban for undocumented immigrants.
The case of Matiana Ovalle, the mother of 22-year-old twins, David and Carlos, further highlights the challenges Latino ASD families face but can still surmount as long as culturally-tailored support is available, and the family fights for it. Ovalle, who immigrated to the US from Mexico as a young girl, directs Grupo Salto, a non-profit organization based in Chicago that serves some 400 Latino ASD families, many of them with adult children like her own. Most Latino families, she says, simply aren’t aware of the services that are available to them, and even if they don’t face a language barrier, they aren’t necessarily accustomed to speaking up and demanding that they receive equitable treatment. Her organization, founded in 2003 and still operating on a shoestring budget, tries to fill that void. In addition to providing Latino families with strategies to access the often forbidding public health care system, it provides collective emotional and moral support. Even while bridging and adapting to the dominant culture, many Latino families need to have a place of their own to commiserate, share stories, and hugs, she says.
Grupo Salto may be unique nationwide in the special emphasis it places on Latino ASD adults in transition, sponsoring an annual tour of universities and colleges for high school seniors who feel ready and able to tackle the challenge. Families also network through friends and colleagues to find their children jobs. David, who has performed in his mother’s small dance company since he was a young boy, is about to become a dance instructor’s assistant. Carlos, meanwhile, has a part-time job as an audio-visual aide. Both are entering college, but still live at home. “It’s a start, and we’ll just have to see where things go,” Ovalle says.
The Grupo Salto model—a quiet partnership with a large mainstream university—is one way of ensuring that linguistically isolated ASD families outside the cultural mainstream get the extra support and guidance they need. Blacher’s doctoral program at UCR and others at universities like Drexel also conduct special outreach to ASD children and young adults in low-income Spanish-speaking communities. But these efforts reach only a small fraction of Latino families. Magaña, who applauds Grupo Salto’s efforts and assists them whenever she can, says leaving it to Latinos to develop their own informal ASD support groups isn’t enough. In her opinion, the mainstream public health system needs to step up to the plate and address disparities more pro-actively, in part by ensuring that clinicians know how to diagnose Latino children properly, and by conducting more pro-active bilingual outreach of their own, above all, to ensure equitable access.
Since last year, Magaña has been working with a team of researchers to test the use of special “autism educators,” based on the promotora de salud (community health promoter) model that’s proven so effective in getting health services to Latinos in low-income communities throughout the Spanish-speaking world. The idea is to train Latina mothers with ASD children to go out into Latino communities nationwide to help educate and mobilize other mothers like themselves. The basic model was first tested successfully in a pilot study Magaña conducted in 2011 in Milwaukee with Latina mothers of children with disabilities. Her most recent series of federal health grants will allow the model to be applied for the first time to mothers of children with autism. Magaña’s past research has shown that Latina mothers are starved for more information about how to help their children and young adults. “Getting information from their cultural peers with similar experiences in a language they can understand results not only in greater awareness of the issues, but a determination to do even more for their children,” she says.
Ovalle, who works for the University of Illinois at Chicago, says she feels lucky to have received support from autism professionals in her workplace, who have helped her find support for her twins over the years. However, what her case and that of the Escobedos seem to suggest most is that strong families with socially active mothers are an unusually powerful protective factor for autism care in Latino communities, a finding that could have powerful implications for Anglo families, too. Magaña’s past research has shown that Latino mothers with ASD children report significantly lower levels of depression and higher rates of life satisfaction than non-Latino ASD mothers—this despite the fact that Latina ASD mothers also suffer twice the divorce rate of Latina mothers with neurotypical children. Equipped with the information and support they need, these women, many of them poor and with limited English skills, will stop at nothing to help their ASD children have a better life, Magaña says, a life they hope—despite their children’s autism—will be better than their own.
Autistic adults face numerous challenges, regardless of where they live. Lack of services, lack of jobs, lack of housing and family supports are universal hurdles to increased quality of life for adults on the spectrum. However, not all communities are created equal. For many families living in rural America, the experience of living with autism is markedly different from that of urbanites—for better and for worse. Quality services can be harder to come by, job opportunities can be limited, and residential options outside of the family home can be virtually non-existent. By the same token, the tight-knit quality of rural communities can often be more socially and emotionally supportive. In this two-part series, AA16 takes a closer look at autism in rural communities as experienced by families in different parts of the country.
Housing & Transportation
Finding appropriate housing for adults on the spectrum is a national challenge, as Angela D. Leonard, Director of the Blue Ridge Autism and Achievement Center in Roanoke, Virginia well knows. Virginia is near the bottom of the national list for Medicaid services and autism services. Few residential opportunities and an abundance of individuals on service waiting lists equal a housing crisis. Leonard notes, “Parents are faced with keeping their adult children at home, in many cases ... a lot of people are on their own.” Leonard’s long-term housing plan for her autistic son, Joshua, involves constructing an apartment-type building on her family’s property. Leonard recognizes that her plan wouldn’t work for every family, saying, “Our circumstances allow us to do something different, and not everybody’s does.”
Leonard also notes that transportation issues often prevent rural families from accessing programs and supports. While urban transportation infrastructure often allows higher-functioning autistic adults to gain a degree of independence, rural residents do not typically have such options. If an autistic adult can ride the bus or subway to their work or day program, they may be able to live semi-independently. But if they live in a rural area and cannot access public transit and are unable to drive, they are much more likely to be homebound.
In the Roanoke area, families work together to use existing transit supports to their advantage. Many area families utilize a disability-based public transit system called RADAR. However, RADAR runs within city limits only. So parents carpool and select meeting places that are right on the outskirts of RADAR’s reach. Leonard also says that living in a rural area renders transportation training for autistic individuals nearly impossible. She describes a Roanoke public school teacher who implemented a successful program for her students on the spectrum that taught them how to use local bus lines. They practiced daily, and gained a new life skill. However, Leonard says, rural students don’t have such opportunities. She sums up the situation: “We’d have to drive into the city to access the bus line to teach them ... so we just don’t.”
Since autistic adults Julia Triassi, Eric Burns, Steele Carmon, and Grant and Blake Way are all living at home, finding autism-appropriate housing is not a current concern. However, all interviewees mention that transportation poses a challenge to acting more independently. Since Triassi (a resident of Mansfield, Georgia population: 413) doesn’t currently drive, she relies on her mother and friends for rides. She has filed paperwork with Georgia’s vocational rehabilitation program, and hopes to start driving lessons.
Likewise, Eric Burns lives at home and does not drive. The Burns family has lived in a rural area near Rapid City, South Dakota (city population: 69,200) for 20 years. Eric’s parents are looking to the future in hopes that Eric can live a more independent life outside their home. Eric’s mother, Sandy Burns says, “We are working with adult services to find an apartment [for Eric], and we are also looking at buying a house that he can share with two other individuals.” However, Rapid City, like Roanoke, has limited public transportation options.
Steele Carmon lives with his parents in a historic home in Powell, Wyoming (population: 6,393) without access to public transportation. While living in a sparsely populated area means travel must be done by car, Steele’s mother, Betty Carmon notes that being a resident of Wyoming affords other advantages for autism families. “Since it’s less populated, people can get on the [Medicaid] Waiver much faster,” she states. “This means training and providers, respite care, job coaching … everything. We’re very fortunate. Kids can get services and training that they need to help make them independent.”
Another challenge of rural life for adults on the spectrum and their families is accessing medical and therapeutic resources. From the start, individuals with autism living in rural areas are at a disadvantage when it comes to health care, as they are often diagnosed later than their urban and suburban counterparts. This delay means fewer early interventions, and an increased potential for skill regression. (To address this problem, a University of Alabama research team has begun developing a video-based diagnostic aid, which they hope will facilitate earlier diagnosis for children with ASD in rural areas.)
But the difficulties go beyond childhood; individuals on the spectrum in rural areas have ongoing issues accessing health care providers. As Leonard observes, “It’s much more difficult to find providers in our [rural] area.” She cites examples of people who drive over an hour to access health care covered by their insurance.
Triassi has experienced the difficulty Leonard describes in accessing providers; she sees several doctors, most at a significant distance. Her psychiatrist is a 45-minute drive away, her neurologist, an hour. Triassi has utilized the Atlanta public transit system in the past, but Mansfield is at a significant distance from bus routes. She says that it’s difficult to manage appointments with far-flung doctors, and expresses a desire to attend support groups for people with Asperger’s in Atlanta. “I’d like to go,” she says, “But I can’t get there.” In turn, Burns says that it was difficult to find good doctors for her son in his early years. She recalls, “One doctor refused to see us because I didn't want [Eric] to get immunizations.” Furthermore, Eric’s medical needs have meant several hospitalizations. “He has had numerous surgeries and some complications because he doesn't seem to feel pain,” she explains. However, she notes that they don’t have to travel extended distances for her son’s medical appointments at this time, and that they’re now able to access providers.
Likewise, Carmon remembers trying to find a pediatrician who would listen to her concerns about her son. She says, “I knew that something was wrong … I’d take [Steele] to the doctor, and they’d say, ‘Leave him alone.’ He wasn’t meeting milestones, and there was a lack of good medical help for us.” Carmon’s community took her concerns seriously, raising money to send her to autism conferences and neurologists from Helena. She says, “There were good doctors [for Steele], but we had to go a long way to get to them.” The school system has lent support as well. Carmon recalls, “Since no one [in our town] knew what to do with [autism], the school system paid for us to go to Denver for an evaluation. It was around the time of IDEA ‘97. They sent Steele’s teachers to Denver to learn about autism.”
Life in a rural area can bring a sense of isolation for autism families. However, sparsely populated places can also give rise to close-knit communities and an atmosphere of acceptance. Leonard observes that parents and siblings make tremendous contributions and creating opportunities for their loved ones where none have existed before.
For many autistic adults in rural areas, religious communities are a primary place of connection. Triassi’s social connections in Mansfield come from her church. She attends religious services every Sunday, and has been a member of a weekly support group for over three years. She also volunteers at her church by working the light board. Though Triassi does struggle with aspects of life in Mansfield, she is committed to serving her community. She recounts, “When I was diagnosed [with Asperger’s], I didn’t really like it, but now I use [my diagnosis] to help people.” Triassi volunteers with the A.skate Foundation, a nonprofit that invites young people with autism to socialize and engage with the world through skateboarding.
Like Leonard, Burns notes that an absence of autism resources has translated to greater collaborative effort. For example, there were no after-school autism programs in their area, so the Burns family and other members of the Autism Society of the Black Hills developed them. At present, Eric’s social connections come from a “Buddy Program” with the local college and the gaming community. Sandy Burns recalls, “The kids in the neighborhood would all come over to our house because we always bought [Eric] the latest video game. He loved it.” Unlike Triassi, the Burns family does not attend a church. Burns recalls an early negative experience, saying, “We tried [to attend church] when [our son] was young, but they asked us that he not attend the regular service, and they would not take him in the daycare ... so we never went back.”
Becky Way—who lives in a rural area 25 miles north of Roanoke, Virginia—says that her family has been invited to events at their church, and that these invitations are the only ones they receive from their community. Since the move to rural Virginia, she believes that more people have reached out to her family, but the absence of a peer group for the twins makes attending church events more challenging. Way notes that her sons would have had a better shot at a peer group in a bigger city, or within a larger church and educating her community has been a long process. She remembers sensing fear and distance when her sons first started attending their local respite care center, but years later, they have formed relationships. Yet at the same time, their neighborhood hasn't warmed up. “Our neighbors have said two words; we've lived in our subdivision for nine years,” she notes.
Carmon cites school as Steele’s primary source of socialization, as well as the local Boys and Girls Club and Special Olympics chapter. She believes that her son has been able to make connections in part because of a decision she made: “Every year, [the school] would have us sign a confidentiality agreement, and I made my own clause that allowed anybody to talk about [his autism diagnosis].” Her strategy seems to have worked. “Once, I overheard two students. One said, ‘That kid [Steele] is the weirdest,’ and the other said, ‘Don’t you talk about him like that. He’s the Rainman.’” And when Steele was hit by a car as a pedestrian, breaking his collarbone and injuring his leg, Carmon remembers a flood of students coming to visit him in the hospital. They brought Oreo cookies and Pepsi … her son's favorite foods.
The challenges and joys that autistic adults and their families encounter as a result of living in rural areas are not so very different from those faced by their urban and suburban counterparts. Across the nation, autism families struggle to access support services, secure jobs, and help their young adults forge connections. But being an autistic adult in a rural area can mean that these universal challenges and joys are magnified. If accessing housing, transportation, and care providers is already difficult, living in a rural location makes it even more so. If the educational system hasn't caught up to the wave of young adults with autism in schools, rural life makes that gap even more evident. However, if it's personal connections that help most young adults with autism find jobs, rural communities can often provide those in ways large cities cannot. And if autism parents and family members are gaining influence in grassroots organizations, living in a rural area means that the groups' impact may be more keenly felt.
In a world where autism families have to fight for services and supports, life in a rural area can make the struggle ever more strenuous. Yet families in rural America are no strangers to hard work. Way speaks for many autism families when she says, “If we need it, we’ll look for it. We don’t really let location be a barrier. We do what we have to do.”
Autistic adults face numerous challenges, regardless of where they live. Lack of services, lack of jobs, lack of housing and supports for families are universal hurdles to increased quality of life for adults on the spectrum. However, not all communities are created equal. For many families living in rural America, the experience of living with autism is markedly different from that of urbanites—for better and for worse. Quality services can be harder to come by, job opportunities can be limited, and residential options outside of the family home can be virtually non-existent. By the same token, the tight-knit quality of rural communities can often be more socially and emotionally supportive. In this two-part series, AA16 takes a closer look at autism in rural communities as experienced by families in different parts of the country.
As a 2011 LA Times article notes, school spending on autism varies depending on an area’s diagnosis rates. In rural communities—where sparser populations can mean fewer children with autism—school supports are often lacking. This is a major area of concern, as having specialized teaching can make all the difference for students on the spectrum. Angela D. Leonard, Director of the Blue Ridge Autism and Achievement Center in Roanoke, Virginia and the mother of an 18-year-old son with autism, knows something about the lack of appropriate education. When her son, Joshua, was diagnosed, Leonard met another autism mother and they began a support group in an effort to share information and experiences. The two thought they were basically alone as autism families, and that their meetings would be sparsely attended. Yet Leonard remembers that by the third meeting, “Forty-six families showed up. No one was connected.” Realizing how the great the need was, Leonard started an autism program out of her home. Seeing her son start to interact with others was all the motivation she required. When the program grew too large for her home, her church donated a facility. Eleven years later, the Blue Ridge Autism and Achievement Center has multiple locations serving multiple school districts. What began as two parents supporting one another became a large regional service provider.
Leonard notes that area public schools aren’t always equipped to serve autistic children well. “The school districts that have higher numbers of kids have more programs.” And having more programs translates to more opportunities for education, socialization, and just plain getting out of the house. The lack of good programs during the K-12 years may carry forward into adulthood. Through her work at BRAAC, Leonard often hears from parents who have young adult children on the spectrum. Many parents at a loss as to how they can facilitate their children's growth and development post-graduation. Once individuals graduate from high school, Leonard says, “They’re sitting at home, playing video games and hanging out. And their parents know there’s so much more to life for them.”
Many young adults on the spectrum and their families have been burned by difficult educational experiences. However, families in urban areas often have a choice as to where to enroll their children. But in rural areas, where distance is greater and facilities fewer, most families don't have that choice, or the option to switch schools in times of crisis. Sandy Burns recounts her 24-year-old autistic son Eric's school experiences as extremely negative, particularly in the early years. The Burns family has lived in a rural area near Rapid City, South Dakota (city population: 69,200) for 20 years. Despite difficulties with the educational system, Burns says, “I really like living here. Everyone knows everyone, and I can take things to our Senators or Governor if I need to.” Burns works as the CEO of Project Solutions, Inc, and she and her husband are active members of the Autism Society of the Black Hills. The Burns family has struggled to find appropriate educational supports for their son. Burns calls her son’s first nine years of school, before his autism diagnosis “horrible.” Unfortunately, the school system responded to the son’s behavioral challenges by blaming his parents. “They did not have a behavior plan, even though [Eric] hid under his desk and screamed all day,” Burns recalls. In order to facilitate supports for her son, she had to fight the schools on the state level. She banded together with other parents to demand better services, and helped found the Autism Society of the Black Hills chapter as well. The result? Fewer issues with local schools, and an autism program, too. Much has changed since Eric was young. Sandy Burns notes, “We have been able to educate the community, and [Eric] is widely accepted here … [Other towns] struggle due to the lack of knowledge on the part of teachers, and no support systems.” At present, Burns is researching ways for her son to continue his educational journey; he would like to take college-level classes, particularly in history. Eric has motor difficulties that make traditional classroom settings challenging (hand tremors prevent him from being able to write independently). But simply attending a college-level course would be a dream come true. Having to fight the school district for services has solidified the family's commitment to Eric's education.
Sometimes, however, attending school in rural areas can have advantages for autistic adults. Since rural areas may have fewer students on the spectrum, more personal attention and individualized supports can result. And in some sparsely-populated states, a higher percentage of special education services receive funding. For example, Betty Carmon’s autistic son, Steele, was nearly 22 when he graduated from their local school system in Powell, Wyoming (population: 6,393). The family has lived in Powell for 30 years, and for over 20 years, Carmon has served as a staff member for the Wyoming Parent Information Center, an organization that supports families of individuals with disabilities. As such, she has both a parental and professional perspective on the area schools. She reflects on her son’s educational experiences, saying, “In Wyoming, special education in our school districts is funded at 100%. We’re only state that does that.” On the other hand, she notes, their rural location meant a lack of educational options; it was public school or nothing for her son. Steele is not currently enrolled in an educational program; instead, the family is focusing on developing his employment skills and opportunities.
Becky Way, who lives in a rural area 25 miles north of Roanoke, Virginia, has two sons on the spectrum, Blake and Grant, 24. The twins live at home with their parents; the family moved to Virginia from Atlanta in 2004. Born with twin-to-twin transfusion syndrome, both young men have health issues and developmental delays. Advantages of their current location include proximity to the Blue Ridge Parkway and hiking, a family favorite. Disadvantages include fewer cultural opportunities. Way remembers it being easier to find fun outings for her twins to experience when they lived in Atlanta.
The twins were homeschooled, both as Georgia and Virginia residents. Way recounts, “Since (attending school) didn’t work out in Georgia, I assumed it wouldn’t work here. Their [Georgia] school had told us [the twins] could only graduate with a certificate of attendance. I said, ‘So you’re telling me that you’re my babysitting service?’ And they said, ‘Unfortunately, yes.’” (After the Ways moved to Virginia, their former school system was featured in news outlets due to its failure to educate young adults with autism.) Ultimately, however, Becky Way withdrew her sons from school because of a single rule: Teachers had to call an ambulance if a student had a seizure. At the time, Grant was having multiple seizures each week. The family’s insurance didn’t cover an ambulance ride, and the school refused to change the policy. Yet Way saw that her twins’ health issues meant that education mattered even more as they aged. “People think education is ‘over’ at age 18,” she notes “But ... Grant’s seizures are more under control than they’ve ever been. So he’s learning more right now than he did then.” Finding continuing educational supports for adults on the spectrum is a nation-wide issue, and few areas have affordable, accessible post-graduate opportunities for autistic adults. And those limited options tend to be found in proximity to major urban areas.
Where does that leave families like the Ways? Juggling care of their children and their professional careers, and wondering what the future holds. At present, Way works as a teacher, so her husband takes the twins to respite care in the morning, and she picks them up in the afternoon. (The twins do not have jobs at present.) Way empathizes with families who have special needs children, and she works with special education students. (Laughing, she says, “I guess [my supervisors] figured I could handle it!”) In her role, she has encountered many parents who don’t know how to advocate for better services. She says, “I’ve been to IEPs that last 12, 26 minutes. Our IEPs used to be 6 hours. We were like bulldogs. We kept asking questions.” She also notes that, despite difficulties with the school system, living in the Atlanta area meant having access to advocacy supports. For example, thanks to an advocacy group in Georgia, autism parents could have informed volunteers accompany them to IEP meetings. “These [Roanoke-area] parents don’t appear to have that,” Way says.
According to a study prepared by the U.S. Department of Education, one in three young adults with autism have had no paid job experience after high school (and no enrollment in college or technical school, either), as USA Today reported in May 2012.
Julia Triassi, 21, is one adult with Asperger’s syndrome who isn’t sitting at home, despite the fact that she lives in Mansfield, Georgia (population: 413). Triassi is an entrepreneur, university student, and part-time employee as well. Triassi’s family moved to Mansfield from New York in 2007, and the move was a huge transition for her. Despite having been diagnosed with ADHD and anxiety, she was a top student in high school class in New York. She received her diagnosis of AS just before her high school graduation, and recalls struggling in traditional classrooms settings before the diagnosis. She says, “I’d get distracted in classes … and having lots of people talking at once bothers me.” However, Triassi’s exceptional memory helped her to succeed in school. And, she says, she’s always known what she wanted to study. “Other students are often unsure of what they want to do, whereas people with Asperger’s [tend to] have focus. I know what I want to do and I’m good at it.” Triassi’s plans reflect this determination; she’ll attend the University of Tennessee at Chattanooga starting in August 2013. She plans to major in photography and multimedia studies. She’ll also attend a year-long socialization class and work with a tutor through the University’s autism-specific MoSAIC Program. She is nervous about the transition, but looks forward to being a student again. Triassi is moving forward with her education, but in order to do so successfully, she's had to make plans to leave Mansfield.
While Triassi has been able to develop her skills and interests, she has had difficulty finding work that fits her well. Triassi currently works at Ingles (a gas station with a grocery store) where she does inventory, and also has a growing wedding photography business. What does Triassi love most about being a photographer? She says, “I escape into my own world. I see things differently than other people see things, and that means I get cool shots, from a different perspective.” In this way, she says, being on the spectrum has been an advantage. However, she finds that living in a rural area can mean fewer potential clients, and lower-paying gigs as well.
Burns’ son worked for a tourist business last summer, but is currently unemployed. The family is working with Vocational Rehabilitation and a job coach in hopes of finding a year-round position. Eric would prefer not to work as a dishwasher, but those are the only jobs he’s being offered. (Burns is thankful to have a good job herself, one that has allowed her to adjust her hours to coincide with her son’s school hours in the past.) She's helping her son with his job search now, but she says, “There are very few jobs for him to apply to ...”
Likewise, Carmon feels solidarity with other autism parents, saying, says, “We have a hard time finding jobs for our kids.” However, she's committed to having her son in the workforce, be it through paid or volunteer work. And her determination has paid dividends. She laughs, saying, “I’m quite assertive. I can make things happen. Families who don’t know where the resources are … they just let their kids do whatever they want, and they don’t progress.” With these words, Carmon echoes Leonard's description of the “typical” young autistic adult sitting at home playing video games all day. To avoid this fate for her son, Carmon has leveraged the opportunities afforded by her small-town location. She knows that bigger isn’t always better and has found that being in a smaller town can means tighter social networks, which can translate to job opportunities. “Every job my son has gotten is through friends,” she says. Steele excels at jobs that require physical labor, though he struggles with communication skills. “You’ve got to be patient with him,” his mother says, “And in small towns, [people] are more likely to be patient.” Indeed, with the support of job coaches, Steele has stocked shelves, stuffed envelopes at the Chamber of Commerce, opened Happy Meal boxes at McDonald's, and hauled Christmas trees. However, Carmon says, her son’s favorite job was with a landscaping company. He’d clear football fields by hand. “It was the perfect job for him,” she says, “He needs physical labor and minimal interaction, and he lined things up all day!” He's currently an office worker at a local day program.
Urban, suburban, and rural families are all searching to find employment for their young adults on the spectrum. So why does one adult sit at home playing video games while another finds a job? To be sure, an individual's level of functioning is a major factor. As an April 2013 NPR story noted, many autistic adults have tremendous technical prowess, and an ability to focus on tasks they enjoy. But other determining factors can prove significant as well. As the Burns and Carmon families' stories show, the tenacity of parents and caregivers and the personal connection to possible employers are both important. And in some cases, living in a rural area may help facilitate these factors.
Leonard concurs that there is an upside to smaller communities when it comes to employment. She notes that there are opportunities for supported employment in her area, but most are sheltered workshops; she estimates that, “Eighty-five percent are not appropriate for individuals on the spectrum.” Though job opportunities have been scarce, Leonard says that personal connections are key. “If there’s anything that allows for an individual on the spectrum to find a job ... it’s usually because there’s a connection.” This holds true for both urban and rural areas, Leonard notes. However, the sparser populations and closely-knit communities found in many rural areas can translate to a greater likelihood of making those key connections.
The search for good caregiver support can be a daunting task. Although there’s no magic to the process I’ve developed over the last 20 years, there are a few key ingredients.
Consider the Requirements
For each hire, take time to think about the current job and the skills necessary to do it well. Why do I need to hire someone? What are the most important things that I need help to do?
Make sure to include those skills and any other unique requirements (own transportation, duration, carpool pickup, etc.) to do the job.
In the ad, I always ask applicants to contact me via email to start the process. This initial inquiry helps document their interest and gives me a peek into their communication style.
After at least one email exchange and an initial screening phone call, each applicant then fills out a four-page “Caregiver Questionnaire.” (Click here for a copy of the questionnaire.) This questionnaire is a work-in-progress with seven key sections designed to help me assess Can Do, Will Do, and Fit, the core components to a good hiring process which I described in an earlier column. Below are the seven sections and their purpose.
One key part of this section is the range of hours the applicant is willing to work. The minimum and maximum request gives me a quick place to look to see if our needs are a match. And it also gives me an idea of their flexibility in case I need extra hours in the future or I discover I need to cut back hours.
The question, “How long would you commit to a family,” was particularly important when I was hiring behavioral therapy assistants for my daughter with autism. I did not want to invest in a caregiver who was only able to commit to one semester. I also noted this requirement in my ad.
A few years ago, I added a self-assessment checklist to help me with determining the softer attributes of the applicant that I found important but difficult to assess in a face-to-face meeting. It is surprising what applicants will reveal about themselves when asked to self-assess. This section can also be used for the, “Tell me more about” line of questioning if a particular attribute is high or low.
I also request a salary expectation.
Customizing the Questionnaire
When I begin to tailor the questionnaire for our particular needs at the time of hire I make sure to be specific. For example, I describe the job, the minimum duties and responsibilities. For example:
I list what I think are the key factors in doing this job effectively are. For example:
In drafting the self-assessment section, I ask myself what characteristics will help this applicant be a good fit. For example:
And to assess education and experience, I ask myself what are the “nice-to-have” factors—not required, but desirable? For example:
Although the questionnaire is a great help in gathering the “can do” and “will do” information, the “fit” factor is much more subjective. With thoughtful open-ended questions and good reference checks, however, fit is a little easier to imagine. If I’m still in doubt, however, I often ask the applicant to come into work while I am here so I can observe directly how they handle the responsibilities.
School Address: _____________________________________________________________
School Phone: __________Home Phone ____________Cell:_____________Carrier_______
Preferred way of communicating:_______________________________________________
What hours are you available during the following times:
Monday Tuesday Wednesday Thursday
Friday Saturday Sunday
Any planned vacations or absences?_____ Dates:_____
Range of Hours Minimum Maximum
_____Semester _______ ________
_____Semester _______ ________
When could you start working?_____
Are you willing to do overnights? _____
Are you willing to do weekends? _____
How long would you commit to a family? ___________________________________________
What job situation(s) do you feel most comfortable with?
Infant/Toddlers:____School age: _____Teens: ____Adults needing assistance:_____
What is your preference? _____________________________________________________
Have you worked with children with special needs?___ Autism?____ Please describe your experience.
Have you had experience with disabled adults or the elderly? ___
What are your educational interests and plans? ________________________________________
What are your interests outside of school and work?___________________________________
On a scale from 1 – 10 (1=low; 10=high) rate your:
Attention to detail_____
Flexibility of schedule_____
Sense of direction_____
Willingness to learn_____
24-hour overnight $_____
Check if you are willing to do or assist with:
_____ Run errands
_____ Change linens
_____ Run dishwasher, put away dishes
_____ Light vacuuming, dusting
_____ Organizational projects (household and administrative)
_____ Tidy living areas
_____ Mop kitchen floor
_____ Assist, or drive with assistance, person with autism to school/camp
_____ Drive mini-van for transportation assistance
_____ Walk/feed dog
_____ Scoop out kitty litter
_____ Dog sit: Overnight___ Extended stays___
Any pet allergies?_____
Like dogs?___ Cats?_____ Owned or cared for either? _______________________________
Do you swim?_____
Have you watched children in a pool?_____
Own transportation?_____ Year/size _____
Have you transported people in your care in your car?_____
Have you transported pets in your car?_____
Willing to drive others in your car?_____
Enjoy cooking or meal preparation?_____
Favorite meals to prepare?_________________________________________________________
What do children/those you care for like most about you?
What do parents/employers like most about you?
What do you feel are your strengths of your caregiving?
Any improvement areas?
Reason you applied for this job?
References (Please give at least two)
Dates of Employment:
Ages of People Cared For:
Dates of Employment:
Ages of People Cared For:
Please return to:
With an estimated 1 in 88 children in the United States on the autism spectrum, an increasing number of families face the challenges associated with caring for autistic individuals. But what is it like for families that have multiple children on the spectrum? How does this affect interpersonal dynamics, finances, living situations, and marriages? And what is life like for non-autistic siblings? To answer these questions, Autism After 16 spoke with Faith Jegede and Lauren Brown, two women who grew up with multiple autistic siblings.
Faith Jegede is a 25-year-old Londoner, a writer and speaker who works at Premier Christian Radio. Jegede has two younger brothers, Remy, 23, and Samuel (Sam), 17. She’s best known for her 2012 TED talk, “What I’ve Learned from My Autistic Brothers.” Lauren Brown is a 22-year-old Californian who works at Surf City Graphics while studying at Cal State University Long Beach. Brown has 20-year-old fraternal twin brothers on the spectrum, Ian and Kyle. Brown is an advocate as well; in February 2013, she created a Facebook page, Autism with Ian and Kyle, to help raise awareness of autism.
Family Life and Housing
Where do Jegede and Brown’s families live, and how do they manage care for their siblings? Jegede’s family has a three-bedroom townhouse in London, where she has shared rooms with both Remy and Sam in the past. Sam, the higher-functioning of the brothers, lives at home with his parents full-time. Sam has strong language skills, yet needs support when it comes to social skills. Remy, who does not speak, lives in a group home a short distance from the family. He transitioned to his first group home “when he was 16 or 17,” Jegede says. The move was fueled by challenging behaviors, “tantrums, hyperactivity, intense frustrations.” She notes, “I’ve seen things that I don’t believe anybody wants to see, that I’ll never talk about in public.”
Brown’s family also lives in close quarters, as they’ve recently downsized from a house to an apartment. Ian lives at home, and Kyle has lived in a nearby group home for the past decade. (He comes home for visits with his parents and siblings on weekends.) Brown describes her brothers by saying that Kyle is, “loud and hyper and in-your-face,” while Ian is, “very laid back, but he doesn’t like to be touched.” Before Kyle lived in the group home, Brown says, “He had tantrums, and it was too much. We had our own rooms, and often I’d lock my door to get away.” Kyle’s behaviors included slapping himself in face, punching holes into walls with his head, and biting others.
Practical Caregiving Supports
Both Jegede and Brown’s families have specific structures in place to facilitate full-time care. Jegede’s father has his own business, and her mother stays home to care for Remy and Sam. Jegede’s brother’s received care from respite workers provided by their local government when they were younger. However, Jegede says, these caregivers proved less helpful than hoped: “It wasn’t consistent, and it wasn’t usually the same person. My parents would leave me with the workers, and I’d teach them how to get used to my brothers, and the next time, they’d be gone!” Jegede is also ambivalent about Remy’s current care situation. She appreciates that he has a residential placement, but says, “He was really developing when he was at school; he was involved with music, and had more interaction. Now it’s very different. When [individuals on the spectrum] get to 18, schooling ends and caring begins. But [individuals] still need that level of education, and it’s not programmed into their daily life.”
Brown’s family has had a more positive experience when it comes to group homes and a privately-hired caregiver. Both parents work outside the home; Brown’s mother is a nurse, and her father as an engineer. Brown says, “We have a caregiver for the after school hours; she’s been the most helpful support. She’s been with our family for almost 15 years.” Brown notes, “My parents are very protective of Ian and Kyle … they wanted to pick someone themselves.” And Brown says that the group home staff has helped Kyle mitigate his aggressive and self-injurious behaviors. She says, “Now, instead of biting, he’ll give me a hug. He doesn’t do tantruming as much anymore. He’s had success at the group home.”
Financial and Medical Impact
Supporting multiple individuals on the spectrum is costly. Brown’s brothers’ Social Security benefit checks have helped pay for the cost of their care, but her parents make up the difference. (Brown mentions that her parents will “pitch in” support for Kyle’s group home, buying items such as a TV, food, and extra blankets.) Medical issues have also been a factor for the Browns, as Kyle has a seizure disorder. And they’ve downsized their living space in part so that they will be able to afford care in the future.
Jegede’s brothers have relatively few medical issues. Remy has celiac disease, but on the whole, Jegede says, “I know how fortunate [my brothers] are; I’ve seen the wide range of conditions you can have along with autism.” She also mentions financial constraints. Her parents would like to transition Remy out of his current placement, but, she says, “It’s really a matter of finances. In our current house, there’s not space! Ideally, we’d like to have the resources to support him in the best way possible.”
Jegede speaks candidly about the effect her siblings’ care has had on their parents’ marriage. She observes, “It’s been a challenge, but their relationship got stronger, because they had to act as a unit by force … And they leaned on their [religious] faith.” Brown’s parents are also married. Yet as noted in the 2011 NIH study, “The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder,” parents of multiple autistic individuals have consistently higher levels of stress. The study points out that, “[The] severity of aberrant behaviors may be related to marital dissolution. Having multiple children with an ASD in the family may also increase divorce, as parenting resources may be particularly taxed ...” Families like Jegede’s and Brown’s face the stresses of dealing with difficult behaviors and supporting multiple individuals.
Additionally, cultural differences have made an impact on both families. For Jegede, growing up in a British household with a Nigerian father and a Barbadian mother involved a culture of privacy. She says, “Autism is something that, culturally, is not expressed openly. My parents are private people; I’m probably the most ‘public’ person in our family.” And Brown says that when her brothers were born 20 years ago, there was significantly less public awareness of autism, and that her family life felt more “private” as a result.
Despite these obstacles, Jegede and Brown clearly adore their brothers. Jegede says, “We have a bond that I don’t think I’ve seen in other brother and sister relationships.” She gives Remy and Sam credit for shaping her interests, saying, “[My brothers] made me into the person that I am. I’m passionate about communication. If I didn’t have challenges with communication [with them], I wouldn’t be this passionate about it.” Likewise, Brown speaks about her brothers with fondness in her voice. She says that Ian and Kyle have certainly changed her for the better. Thanks to them, she says, she gives people the benefit of the doubt: “I tend to be understanding if someone’s acting different. I don’t judge. I just think, ‘You don’t know their lives.’”
Siblings as Caregivers
As eldest children, Jegede and Brown have helped to care for their siblings from a young age. As Jegede says, “When I lived at home, I would help with feeding, teaching, playing, and potty training.” Brown often assists her parents too. For example, she says, “If my dad would go grocery shopping with both [Ian and Kyle], I’d kind of corral them and help. At the house, I’d help with getting ready for bed.” Even so, she says that when both brothers lived at home, the family never went out. And only one parent would come to events and holiday celebrations, because Kyle required constant care. Even now, when Kyle is home on weekends, Brown says, “I can’t really have friends over, because that’s his time.”
Jegede also says that it’s been difficult to connect her family with her “outside” life. She says, “Some of my friends did not know I had autistic brothers until last year. When we did invite people over, they didn’t quite understand the situation, so we ended up isolating ourselves anyway.” And the responsibility involved in being an elder sister sometimes set her apart from her peers: “On school days, as soon as I came in the door [to my house], I was a different person, a responsible figure. At school, I could just be a kid.” Brown says that it was difficult to invite friends over for visits and sleepovers; though they were “understanding,” she felt that it was hard for them to relate to her home life.
Likewise, Jegede says, “I had to grow up very fast, and I didn’t realize that until recently. In my late teens, my mom and I had a conversation about it. It was an emotional conversation, because our situation was incredibly intense.” In turn, Brown remembers, “Growing up, I had to defend [my brothers], and always watch over them.” That continues to this day. She recounts a recent shopping trip, saying, “Ian can’t go to bathroom by himself, so I took him into the ladies’ room with me. And one lady said, ‘What is he doing here?’ So I said, ‘He’s autistic.’”
Looking to the Future
Jegede and Brown are frank about how their siblings’ futures are intertwined with their own. Without being prompted, both mention the possibility that they’ll become their brothers’ full-time caregivers. Brown says, “After our parents pass away, I’ll take care of [my brothers]. They probably won’t live with me, but if they ever have to, then for sure, they can.” Jegede and her fiancé are moving to the United States, and she’s lost sleep over the effect this major transition may have on her brothers. However, she says, “If we have to move back to England to care for [my brothers], we’ll do so.” In contrast, Brown says, “I’ll always stay close to [my brothers]. I love California. They’re here, and I’m not going to move them across the country.”
And when Jegede and Brown consider starting families of their own, they do so with their brothers in mind. They ponder both their commitment to care for their autistic brothers as well as the odds that their children will have autism. (Though autism has a genetic component, heritability remains complex. Children of siblings may have an increased likelihood of being autistic, but little more is known.) When asked how if they think about the possibility of having children on the autism spectrum, Jegede says, “All the time! I definitely want children, and I do get concerned about the prospect.” Even so, Jegede and her fiancé are open to the possibility. She says, “We rest assured that God’s in control, and I try to ‘edit out’ the rest. And I think about introducing [my children] to my brothers, helping them know how to love all kinds of people.” Brown is undecided, saying, “I think about one day having my own family, but it kind of scares me. But I like the idea of including my brothers in my family life. It would help teach my kids acceptance.”
Their responses are different, yet both women want to connect their brothers with their future families. Both imply that their children will have much to learn from their autistic uncles. They believe that their brothers have a place in their future, as they do in their hearts. And that belief is, perhaps, one of the greatest gifts that having multiple siblings on the spectrum can give.
Imagine yourself to be a rookie cop, two years “on the road,” patrolling an average-sized town in America. It is 2:00 a.m. on a Saturday night shift and you just finished your second cup of coffee. You are a “Type A” personality. You are assertive, ambitious, and eager to prove your mettle to your peers, your supervisors ... yourself.
Your Police Academy instructors have drilled it into your head that priority Number One of any encounter is to gain control. You have also been taught that those who hesitate often don’t survive. You are physically fit, but deep down inside you are scared. Scared that you aren’t brave enough, scared that you aren’t strong enough, scared that you aren’t tough enough. Your dispatcher calls you on the radio and says this:
“Respond to 135 Maple Ave. for a possible domestic assault in progress.”
You activate your lights and sirens and the adrenaline dumps into your system. You take some deep breaths and try to implement those emotional control exercises they taught you in the Academy. You start talking to yourself:
“Why didn’t I pay closer attention in the Academy that day? Get it together. Stop your hands from shaking. You can handle this.”
Your dispatcher calls you again:
“Unit responding to 135 Maple Ave. ... additional information ... adult male is out of control assaulting a female and throwing furniture around the house ... unknown if weapons are involved ... We can hear the female screaming and crying in the background ... backup is not available.”
You turn onto Maple Ave. and start looking for 135. You start going over your training:
“Get control of the situation. Keep your head on a swivel. Watch out for weapons. What kind of jerk assaults a woman?”
Your dispatcher calls you again:
“Unit responding to 135 Maple Ave. … additional information ... subject may have autism.”
You pull up to the house. You hear screaming, glass shattering and crying.
“Autism? What is that? Didn’t Dustin Hoffman play a guy with autism in that movie with Tom Cruise? Get your mind right, Hot Shot ... it’s GO time!”
You open the front door ...
In this scenario, is it at all difficult to understand how tragedy can occur? We know there is a need for more training and understanding of ASD within the ranks of our police departments. We also know there is a communication gap between ASD families and the cops who are sworn to serve them.
Several months ago I wrote an article offering my perspective as a police officer and an autism dad on the need for understanding and empathy from both sides of an issue that is growing larger by the day: police interactions with individuals on the autism spectrum: Police and Autism. As an autism dad I understand the instinct to throw our hands up and demand that our police and first responders become more knowledgeable and skillful in dealing with our loved ones on the spectrum. And those who make that argument are 100 percent right.
But what can you do about it?
I firmly believe in the proverb “It is better to light a candle than curse the darkness.” I humbly assert that parents and caregivers of ASD individuals must take more responsibility for advocating for their loved ones and take a more active stance in educating their local first responders.
Who, other than you, is more knowledgeable about your loved one’s needs? Who knows your loved one’s fears, anxieties, pet peeves and emotional distress triggers better than you? Who is more in tune with the most effective and efficient avenues of communication with your loved one? Who is better equipped to advocate for your loved one and educate your local police officers ... the people who will be responding to your home in an emergency ... than YOU?
If you are anything like me, you have spent your life advocating for your loved one. You have all but gone to war with the school districts, the insurance companies, doctors, your neighbors and perhaps your own family on your family member’s behalf. Take that energy and that passion for advocacy and proactively address your local police agency. It is not as hard as it seems.
Here are four steps you can take right now to bridge the gap with your local police officers, increase awareness of ASD and better ensure that when a crisis occurs, your loved one will be treated with understanding and compassion rather than being misjudged and misunderstood:
Let’s revisit the earlier scenario. You are the same police officer responding to the same house for the same “domestic assault.” This time, however, let’s imagine that the “victim” had proactively taken the steps I just outlined:
“Respond to 135 Maple Ave. for a possible domestic assault in progress.”
You activate your lights and sirens and the adrenaline dumps into your system. You take some deep breaths and try to implement those emotional control exercises they taught you in the Academy. You start talking to yourself:
“135 Maple? That is Robbie Taylor’s house. I remember meeting him and his family at the police station last year. He loved my whistle.”
Your dispatcher calls you again:
“Unit responding to 135 Maple Ave. ... additional information ... adult male with autism named 'Robbie' is having an emotional crisis. Mom needs assistance in calming and controlling him."
You turn onto Maple Ave. and start looking for 135. You start remembering your conversation with Robbie’s mom:
“Robbie is a very gentle person. But he sometimes gets frustrated when he can’t communicate his needs. On occasion he gets emotional and lashes out. We have found that, if he trusts you, he can be redirected by asking him about some of his favorite things. He loves the NY Yankees, Batman movies and surfing. He has a difficult time expressing himself, but he is very intelligent and understands everything you say."
A fellow police officer calls you on the radio:
“Unit responding to 135 Maple Ave. ... I just spoke to Robbie’s Mom yesterday. She said he is very anxious about attending a new school on Monday.”
You pull up to the house. You hear Robbie crying and his Mom trying to calm him.
“My portable radio scared Robbie the last time we talked. I’ll turn the volume down. Let me grab my whistle. I just heard the Yankees traded A.J. Burnett ...”
You open the front door ...
Clearly, this second scenario holds a much greater probability of a positive outcome for all involved. Yes, it is still a tenuous situation and emotions are high. But at least we are beginning the encounter on a foundation of understanding and compassion.
Once the officer arrives at your home, even if you are upset, exhausted or injured, you are still your loved one’s most capable advocate. Try to remain calm and concise with the information you provide. Explain his challenges, abilities and emotional triggers as best you can and offer any practical advice you can to the officer. I personally hate phrases like “communication capacity of a ____ year-old.” However, over simplifications such as these are often useful in quickly painting a picture for people who have never met your loved one.
Remember, the officer’s primary responsibility is the physical safety of everyone involved in the incident. This may require temporarily restraining your loved one. This is always traumatic for both of you. Try to remain calm and understand that restraint will be removed as soon as control can be achieved safely.
If you or your loved one is injured, EMS will be called to treat you. This will involve several additional strangers in your home and could increase tensions once they have eased. Keep your head and be prepared to explain your loved one’s condition and circumstances all over again. Once the police and EMS have gained control of the situation, a difficult decision will have to be made regarding the care and custody of your loved one. This will involve weighing four basic options:
These crisis situations are difficult to think about. I don’t even like writing about them. With a small amount of preparation and forethought, however, we can minimize trauma and avoid tragedy. We all have work to do. Police and first responders, without argument, must increase our understanding and acceptance of ASD individuals. I believe this must be done on a local level, however. The key, as usual, lies in our hands as the caretakers of individuals on the spectrum. We have proven over and over again that our love and dedication for our loved ones can move mountains. I have no doubt that, together, we can bridge this gap too.
One week before Emily's brother's wedding; Emily and I in our car. Loosely based on an actual conversation.
“Em, why do people cry at weddings?”
“Imagine if someone like your sister was getting married. You know your relationship with her is going to change forever. You'll still be brother and sister of course, but now it's like 'oh, she's getting married and I won't see her as much.'”
“Kind of a separation thing, then?”
“Yeah, you might say that.”
“Then why don't more people cry at, say, high school and college graduations? After all, that's a big change too, not to mention you may not see these people again for a long time, if ever. Not to mention at weddings themselves, why do the guests in general cry? It's not like most of them are that close to the bride and groom anyway.”
“I really don't know, Jeff. But at the wedding, don't you go asking the other guests why they cry or don't cry!”
“Of course I wouldn't do that Em!” Roll of the eyes and point at Emily. “And by the way, that's going into next week's column!”
Rolls eyes and grins. “OK, Jeff. By the way, is that your Autism After 16 column you're talking about?”
“Yep! Anyway, if I thought doing an impromptu poll at weddings was appropriate I'd ask 'em instead about, say, contraceptives!”
“But seriously, I'm asking you because I've always heard that guests cry at weddings and I've never understood that. I never felt the need to cry at weddings and it makes me feel weird. Do people look down on me for being different that way—you know, not feeling the way they feel?”
“I certainly hope not, Jeff.”
“I hope not, too. Meanwhile, I'm glad to go to the rehearsal Friday. Even though I won't be doing anything during the ceremony itself—except maybe keep a chair from floating off into space in case, you know, gravity suddenly gets canceled—I like to see what's going on in advance so I can better relate to it during the event. Heck, wouldn't it be nice if weddings had scorecards like baseball games do? They certainly have at least as many major players—complete with their own distinct positions. Instead of left field, shortstop, first base, pitcher and catcher there's the bride's father, best man, maid of honor, groom and bride, for example!”
“Yeah, I know what you mean, Jeff.”
“You know, weddings are among the most complicated things anybody can go to. They're sort of spectator and sort of not, because unlike a baseball game people really care how you seem to feel and relate to each person who's on stage. And on the other hand, if you get a whole bunch of pictures of, say, Derek Jeter and put them up on all your walls you're just an avid fan. God help you if you take a dozen pictures of, say, the ring bearer and put them up on your Facebook page—you'll never hear the end of it!”
Laughs and shakes her head.
As you know, we've got a baby on the way. (As of now, we don't yet know whether it's a son or a daughter.)
For that reason, we've bought a house, and we're moving in stages.
Now, I've moved many a time. In fact, ever since leaving my parents' home for the first time to go to college, I have never hung my hat in the same place for three years at a stretch. (In fact, as of four years ago I hadn't even lived in the same place for two years consecutively!) And Emily and I have moved together a couple of times already.
This is the Big One. We're now moving a houseful of stuff.
And what's more, we may be there for not two or three years, but an order of magnitude more. Kind of puts a new light on neighbor-to-neighbor relationships. (Especially since I'm the one who will be there the lion's share of the time.)
Meanwhile, I'm resisting being overwhelmed by the process. Our landlady has been nice enough to give me a list of the various specific things she needs done before we leave.
And, I've learned bit by bit to make multi-day plans of what to do and when.
For example, Monday morning, clean out the den. That afternoon, load up the car with extra clothes, then drive down to the new house and put them away.
Tuesday morning, clear away the books and papers so prospective tenants can come see the place.
Tuesday afternoon, load many of said books and papers into the car, drive up to the new house and put them all away.
I'm managing this mainly myself, since Emily is super-busy at the office. (Not to mention she's devoting all her remaining energy to her work since our baby is taking up much of said energy.)
And of course there are the annoying little details of moving. Such as changing addresses, reserving a U-Haul, arranging for moving helpers.
BTW, moving itself doesn't especially bother me as an Aspie. I'm used to that kind of change and I always have at least a bit of advance warning.
Some things are annoying to most people. Some things can be particularly overwhelming to Aspies because we have to decide what needs to get done, and how much of it needs to get done by when.
Especially with all the interconnections. If I drive down to the house with all the books on Monday and Tuesday, that means I need to ask prospective tenants to come on Wednesday instead. Meanwhile, the more I manage to take up to the house in advance, the smaller a truck we'll need and the more likely we can find one we can use on shorter notice. That in turn means we (the editorial we!) can use a bit more time in other preparations.
When everything is bound up with everything else, we need to handle multiple things at once, and think several moves ahead. And like handling change and taking initiative, these are sometimes exhausting but necessary skills.
The weather is warm and breezy. Kids are out of school. The pace of life seems to slow down, even just a little: It is summer.
Most people in American society can’t wait for a summer vacation. People dream all year of taking off to the beach, or hightailing it on some adventure. What if you are on the autism spectrum? Is summer vacation just as enticing?
Maybe. A stereotype about autistic adults is that we do not like traveling. In order to travel, don’t you have to leave the familiarity of home? Won’t it be too hard to cope with new environments, new routines, and new people? The reality is that some of us on the spectrum like to travel and some of us don’t. Whether you can’t wait for vacation—or you’re being dragged along on one—planning can help.
Always thoroughly research where you are going. You don’t want to end up at an idyllic resort on a tropical island and discover your room has no air conditioning if you require it. Make a list of amenities you absolutely need, things you can’t stand at all, and a list of features you would enjoy but could do without. Then call the hotel where you will be staying and ask questions. If you aren’t staying at a hotel, you can politely ask your host.
Also consider conditions outside. You might be counting down the days until you get to the beach, but are you facing the ocean or a bay? Oceanside will always have rougher tides and bigger waves—great for surfing, or sunbathing, but not typically ideal for swimming. And what is in the water? Don’t find out two minutes after you put your towel down on the sand that the water is full of stinging jellyfish.
The more information you have, the less disappointment you’ll face. I had a friend who saved up a lot of money for a trip to a rainforest. He thought he was going to see animals, go hiking, and sit by waterfalls with exotic flowers. Instead, the rain was so heavy every day that the trails were too muddy for exploring. He didn’t realize that the month he picked always has the worst weather of the year.
If your hotel or host doesn’t have much information on local conditions, you can call the visitor’s bureau of a nearby town or city. Check weather websites, too. Or ask locals for the best advice on safe, travel-oriented chat boards. Never be afraid to ask. People understand that you don’t live where you are going. Usually they are very happy to describe what is home to them.
In addition to thoroughly researching conditions like weather and features like air conditioning, next on your list should be food. Many of us are on special diets or have numerous food sensitivities. What will you be able to eat while you are away?
If you are staying at a hotel, you can usually see menus and hours of the hotel restaurants on the hotel website. Does the hotel have a shop that carries items you can purchase if the hotel restaurants do not suffice? Some hotels are walking distance to malls or towns, expanding your options. Many hotels will also pick up items for you or take you in a hotel van to a shopping area. Usually there is a fee for this service. If you are really hungry, it’s worth it. Don’t forget to ask for a hotel fridge or microwave if this would help—hotels typically have them, but often reservation in advance is required.
If your diet is extremely limited, you may have to bring food with you. This is not as complicated as it might seem. For example, you can pack a box of your favorite cereal in your suitcase, and then buy milk or soymilk once you land. As a vegetarian, I’ve packed mixes or soup packages that require only hot water—something usually obtainable in most places. Twice, traveling companions of mine packed gluten-free pasta or gluten-free frozen entrees and the hotel kitchen manager cooked these specialty items—he simply asked my friends to come by at a time that the hotel restaurant wasn’t busy. They tipped him for his help.
Food is crucial to consider during visits with relatives and friends, too. Hosts may be offended if you won’t try their food or accompany them to their favorite restaurants. If you anticipate that a host might be sensitive about your food proclivities, communicate honestly and well in advance. Grandma will want to know that you really appreciate her quiche and that you just can’t swallow it for reasons that don’t have to do with her efforts. Be as polite as possible. If you can, offer an alternative. For example, you could say to Grandma, “I really appreciate the quiche you make every year when we visit. But I have severe sensory issues with eggs. I do love your spaghetti and meatballs. Could we make that together?” Or you could say, “Grandma, I appreciate that you love to cook for me. But you know me with all of my sensory issues! Could we go out for ice cream instead?” Grandma might be disappointed that you’re not going to eat that quiche, but she’ll have some other ideas for how to feed you.
For most adults on the autism spectrum, the real issue with vacations is idle time. My brain needs to be active. Doing nothing is just not relaxing. The best way to tackle this issue, especially if your vacation is mandatory, is to write or draw a schedule for each day, or print out a schedule on the computer.
When we went to Disneyland, I divided activity time into morning, afternoon, and evening. Each slot had a desired activity and a back-up activity. If you have back-up activities on your schedule, you will always have something to do in the event of unforeseen closures, lines that are too long at your first choice, or uncooperative weather.
Making this schedule allowed me to balance everyone’s needs. For example, I knew some members of my traveling team would like an afternoon on the beach snoozing in the sun. So I could plan to visit a nearby nature center at that time on my own, or I could join everyone on the beach armed with a stack of academic journals to analyze while they tanned.
Now some people will say that vacations are supposed to be spontaneous: You simply show up at a location, and then see what happens. If that is your style, there is no problem going the spontaneous route. But my personal experiences and the experiences of family and friends on the spectrum suggests that a planned vacation can be just as fun and a lot less stressful for us. You’ll relax knowing the schedule has blocks of time for your interests balanced with required activities or the preferences of your traveling partners. You can also build into the schedule enough time to recuperate from sensory and social overload.
If you worry that too much idle time will sky-rocket your anxiety, or if you don’t want to be a tourist in a hotel, service vacations are another option. Clean up a beach, count owls for a nature protection agency, teach English for two weeks at a refugee center, or build houses for homeless families—the choices are endless. Do a search on the Internet and you will see many types of service vacations.
Service vacations vary widely. Sometimes, you need no skills—just a desire to help. Other times,you must have carpentry or nursing skills or scientific lab experience. The trip might be highly regulated, with every single minute on the schedule filled. Or the trip might have a more leisurely pace, with afternoons off for hiking or swimming or side trips to museums. When looking for a service vacation opportunity, think about what type of work and what type of work schedule would be best for you.
Once you find a service trip you might want to sign up for, do the same pre-trip research and planning you would do for any vacation. On service trips, you usually have less chance to bring or buy your favorite foods, and amenities may be wholly absent. Some activities may be required or optional. Always check the reputation of the agency facilitating or offering the service trip, too. Ask to speak to prior participants to really understand what the service trip is like.
Note that some agencies or groups will charge you a fee even though you are volunteering. This is because the facilitating agency will be arranging tickets, organizing logistics, and providing accommodations. Some service trips charge you for insurance, tools, pre-trip training, special equipment, or side excursions. The facilitating agency should be absolutely clear about what you are being charged for and what the fees include.
If the idea of leaving home makes you jittery, you can still plan an adventure in your home town. The idea of a “stay-cation” is catching on and is also great if you are on a low budget. Get on the computer or call the visitor’s bureau and make a list of interesting things to do in your town or in your region. You may discover things to do that you’ve never heard about, even if you’ve lived in town your whole life. Lots of museums, parks, and tourist attractions have discounts or free days for local citizens. Because you’re local, you can also go at less crowded times.
Not into formal places to visit? Just take a stroll downtown and see what there is to see. Or follow up on your special interests. Have a special interest in cargo traffic? Go watch the ships loading and unloading at the port. I had a friend who spent two required vacation days counting the number of pizzerias in his city. He had always wanted to know, and when his boss insisted that he take the two days off, he realized this was his chance.
Also, consider doing things that you haven’t been able to do for whatever reason. Always wanted to decorate your bedroom like Mos Eisley space port? Never had the time to paint your garage orange? Want to sleep late, wander into Starbucks, and read The New York Times all morning while enjoying a delicious drink? Guess what—you can! You’re on a stay-cation.
With these tips and fresh ideas, the idea of a vacation doesn’t have to be overwhelming. I found through my many years of extensive travel that minor inconveniences were worth it for the chance to meet new people, see new places, and participate in other cultures. With careful planning, you can work out destination, sensory, food, and activity issues in advance. If you must always have tea in the morning or you must always use a blue towel, this doesn’t mean you can’t travel. And for those of you who don’t want to roam, you can still find plenty to do right in your neighborhood or in your state. Whether you are headed for an all-inclusive resort, volunteer work in a frog sanctuary, or a dental museum a few miles from your house, I wish you in advance happy adventures this summer.
It is unthinkable. It is every parent’s worst fear. For a special needs parent or caretaker the mere thought of it can be crippling. You let your guard down for a moment. You turn your attention away from your loved one for an instant. He is gone.
As a police officer, I have seen that desperate look in the eyes of a parent many times. As a K9 handler, I have felt the almost unbearable burden of having a family’s entire world resting on my shoulders. As an Autism Dad, I have also felt the knee-buckling terror of losing my child.
For neurotypical families, the dangers of wandering start to subside as their children reach the age of 5 or 6 years old. For many special needs parents and caretakers, however, the dangers remain throughout the teenage years and, often, well into adulthood.
The immediate actions taken by the caregiver of a wandering special needs individual are critical to the success or failure of the subsequent search. Unnecessary delays, inaccurate communication, or emotional paralysis can literally mean the difference between life and death. In this article, I will offer insights into the process of a missing persons search from the perspective of the police. I will also offer suggestions to more efficiently communicate with first responders and search personnel to maximize the chances for a successful outcome to our worst nightmare: a missing loved one with special needs.
For the purposes of this article, I will use the most typical wandering scenario: an individual wandering from his own home. Obviously, true to its name, ASD encompasses a spectrum of functional, behavioral and emotional challenges. I can only speak generally and offer some thoughts that are relevant to the largest possible segment of our community. I freely acknowledge that a lot of this is easier said than done. I have made many of the mistakes that I will mention and I, of all people, should know better. Please understand, I am not here to judge and I do not claim to know it all.
Time is the enemy
It is human nature, once the realization hits you that your loved one is missing, to start looking for him. The emotional process seems to include inherent barriers of acknowledgment that take time to break through. You first begin searching by yourself. Anywhere between two minutes (an eternity when your loved one is missing) and 10 minutes into your search you may think to enlist the help of your spouse, other children and members of your immediate family. Panic sets in and logical thinking becomes difficult. You check and recheck areas of your home and yard. Your search is random and inefficient. Then your imagination starts to run away. To be blunt: You are flailing much like a swimmer in a riptide. But the swimmer who gains control of his emotions and begins to think rationally is more likely to survive the ordeal.
Keep in mind that it is quite common to locate a “missing” special needs individual inside their home. Often they crawl into or under a bed, into a closet or behind furniture. They may be embarrassed, spiteful or scared. Sometimes they fall asleep, oblivious to the chaos around them. I have been involved with several large-scale missing persons searches that ended with a radio transmission advising the individual was found asleep in their room. Rule out this possibility quickly and efficiently, then ...
Call the Police!
I have been dispatched to searches HOURS old. I have seen families canvass neighborhoods on foot and in cars for hours, in full panic mode, before it occurs to them to report the matter to their police department. For some, a sense of embarrassment and failure as parents demands that they keep the matter private. For others, a fear of some legal ramification delays their action. For others still, it simply does not enter into their minds. When I briefly lost my son in a shopping mall a few years ago, I remember dreading the embarrassment among my peers. “I’m a cop. I don’t lose my kid.” I’m ashamed that emotion even entered my mind, but it is what it is. We are all human.
There are many reasons why delay at this stage is dangerous. Obviously, the longer the individual is missing the higher the chances he will encounter danger. As time increases, so does the distance he can travel. Daylight is precious in search work and must be treated as such.
Police tracking dogs are trained to smell and follow human scent. Although some police dogs, such as bloodhounds and some patrol dogs, can be trained for scent discrimination (ignoring all scents except the one presented to them through a scent article such as a worn shirt or hat), most are trained to track the freshest scent available to them. If a K9 officer brings his partner to your backyard and commands him to “track,” who will he be tracking—your missing loved one or you and your family who walked around the yard countless times before calling the police?
Police, Fire and EMS departments have a vast array of resources and experience to bring to the table. The most valuable, however, is manpower. We are not coming to judge you and your family. We are here to help you. CALL US RIGHT AWAY.
Keep It Together
The minutes that pass as you wait for the police to arrive will be the longest of your life. It is unrealistic and unreasonable for me to suggest that you just sit and wait. Of course, you are going to keep looking for your loved one. But understand that the police will need quite a bit of information about you and your loved one when they arrive and you will be in no mood and no frame of mind to sit and provide this information when someone you love is missing. It will prove invaluable if you can prepare a lot of this information before hand and have it ready in case of such an emergency. Early in my K9 career I was given this Wanderer’s Information Sheet. It is designed to cover Dementia patients as well as people with ASD. Just compete what is relevant. I suggest filling it out with as much detail as possible and stashing several copies in your home, your car, and with your extended family.
Know Your Loved One
A lot of the information on the Wanderer’s Information Sheet is straightforward, identifying information for your loved one. Some of it, however, is not as intuitive and may not occur to the responding police officer to ask, unless he/she is experienced with ASD and missing persons searches. Offering this information will expedite the process.
Below is a list of questions you should not only be prepared to answer about your loved one, but prepared to proactively offer to the police (Don’t assume the responding officer will think to ask these questions):
1. ”Where do you live” (as opposed to “What is your address?”)
2. ”What’s your name?”
3. ”Where are your mom and dad?”
4. ”What is your phone number”?
5. ”Are you OK?”
6. ”Do you need help?”
I think it’s very useful to proactively visit your local police, fire and EMS departments and introduce your loved one to as many officers as possible. This will serve a couple purposes: First, it will hopefully dampen any fears he has toward these officers. In addition, it will allow the officers to interact with you and your loved one and get a feel for his behavior and abilities. Remember, this may be the officers’ first experience with an individual on the autism spectrum.
It is also critical that you have easily accessible and up-to-date pictures of your loved one. You should keep both printed pictures and digital copies (saved on a flash drive) to ease the distribution to search personnel and the press if necessary.
The police will quickly establish a command post, probably in your home or close by. It is imperative that at least one family member remain at the command post to answer questions as they arise and maintain contact with friends, family, neighbors, etc.
An Incident Commander will be named. He/she will probably be a ranking police, fire or EMS officer. He/she will be responsible for coordinating the search effort and keeping track of the areas that have been and need to be searched. If family members and friends are assisting in the search effort, it is imperative that they coordinate and maintain contact with the Incident Commander in order to avoid redundantly searching some areas and mistakenly missing other areas. As time progresses the search will grow larger in terms of area to be covered and personnel and equipment involved.
Prepare yourself for an extremely phrenetic and chaotic scene. There may be rescue vehicles, legions of volunteers, even helicopters circling your home. It will overwhelm you if you let it. The Search and Rescue personnel should understand that the presence of so many vehicles and people around your home may very well frighten your loved one away if he makes his way back to the area. Don’t be afraid to mention that possibility and request that noise, emergency lights and extraneous personnel be moved from your property if at all possible.
Remember, we all get scared. It is a natural human emotion. Accept it and acknowledge it. But do not let it cripple you. There will be an army of volunteers ready to help you. Stay strong for your loved one and keep your composure. You are stronger than you think.
It pray that you never have to personally use this information. But I also pray that, if the unthinkable happens, this will help in some small way.
Losing a child is commonly referred to as every parent's worst nightmare. Yet this is exactly what Linda Walder Fiddle experienced in 2000, when her son, Daniel Jordan, passed away suddenly at age nine. Somehow, from the ashes of that deeply sorrowful time emerged a new creative vision, and a way to honor the life of her son, who had an autism spectrum diagnosis. Two years after Daniel’s death, Walder Fiddle started the Daniel Jordan Fiddle Foundation, a nonprofit organization that has since become a leader in services, supports, and advocacy efforts for adults on the autism spectrum.
The Focus on Adults
The Daniel Jordan Fiddle Foundation, which has its headquarters in Ridgewood, New Jersey, began in 2002. At the time, it was the only national autism organizations to focus solely on adults on the spectrum. Other autism advocacy organizations that existed at the time did not specify an adult focus, and spent most of their energies and monies on services such as early childhood intervention programs.
Why did the DJF Foundation choose to focus its efforts on supporting adults on the spectrum, given that Daniel Jordan Fiddle was a child when he passed away? Walder Fiddle, who serves as the organization’s Executive Director, says, “Ten years ago, when I decided to start the DJF Foundation, I decided to focus on adults because nobody else was. During my son's lifetime, I was concerned about what would happen when he aged out of school programs. Over a dozen years ago, I had these concerns as a parent … There was very little available [for adults on the spectrum] fifteen years ago. Today there's so much more; it's very gratifying to see.” And, as Walder Fiddle wrote in a letter to supporters, she also sees her work with the DJF Foundation as a way to continue in her role as Daniel's mother, a way in which she can continue to love and honor him.
Walder Fiddle recalls that when Daniel was alive, she experienced the same fears and looming questions that keep other parents of children on the spectrum awake at night: Will my child lead a rich, full life? Will he have opportunities to grow and develop in his work and relationships? Will he be celebrated for his gifts, and not ostracized for his differences? Where will my child live? How will he find housing and receive the personal, social, vocational and behavioral supports that he may need?
The DFJ Foundation works to help ASD adults, parents, and caregivers answer those big questions with confidence. Its mission is multifaceted. First, it seeks to actively support adults on the spectrum, in terms of professional services, personal supports, and self-advocacy programs. Next, it works to change the societal perception of adults with autism. The DJF Foundation's aim is for adults on the spectrum to experience community inclusion and living to their fullest potential in their everyday lives. In pursuit of these goals, the nonprofit, which is staffed solely by volunteers, has an active calendar. All across the nation, the Foundation hosts programs, coordinates events, provides grants and scholarship funds, and offers accessible, up-to-date resources for individuals on the spectrum.
A Catalyst for Change
The DJF Foundation was a catalyst for change in Walder Fiddle's life, giving her purpose and clarity in a time of grief. In a similar way, the organization has brought encouragement and support to families who had nowhere else to turn. When thinking back to the start of the foundation, Walder Fiddle remembers, “Starting out, the biggest challenge was to find organizations to partner with, who realized that autism is a lifespan challenge, not just affecting children. I reached out to service providers that I knew, and I said, 'Would you serve adults?' It was coming to them with ideas, using their expertise, and helping to open a door for adults on the spectrum.”
This simple approach—reaching out to existing autism organizations and asking them to expand their services—has been remarkably successful. Of the DJF Foundation's first project, Fiddle recalls being inspired to contact the Executive Director of the Jewish Association for Developmental Disabilities (J-ADD), and proposing that they pool their resources to start a hotline and create a resource guide for adults on the spectrum. Ten years later, the DJF Foundation hotline is still serving adults with autism, and the model has been replicated in several other communities across the country.
This organic evolution has characterized many DJF Foundation programs. However, though the Foundation seeks to serve adults on the autism spectrum in all areas of their lives, they have recently expanded their focus. At present, the DJF Foundation seeks to create templates for other communities and organizations to utilize. “Two years ago, we decided we wanted a broader scope,” says Walder Fiddle. “What I have discovered as a grant-giving organization is that, to affect a larger amount of people, we need to create blueprints for adult life. We have co-developed programs that we feel can be shared and developed in communities everywhere.”
Current Focus and Projects
With this model in place, the DJF Foundation continues to expand. When asked about current projects for 2011, Walder Fiddle lists a vast array of partner organizations with whom the DJF Foundation is creating programs for adults on the spectrum. From horseback riding programs that teach life skills to residential programs to vocational programs where young adults take on job assignments in their communities, the DJF Foundation works with different organizations across the country. These varied collaborations have served to strengthen the DJF's commitment to supporting individuals with autism in all areas of their adult lives.
When asked about current programs that are bringing new excitement to the DJF Foundation staff, Walder Fiddle mentions a partnership with Global and Regional Asperger Support Partnership (GRASP) to create a peer support group program for adults with AS over 50. Supporting senior adults on the spectrum has become a priority. In Walder Fiddle's words, “This is an avant-garde program, because the people who are 50 have different needs from those who are 20. Many of these individuals were not diagnosed until recently … and there's a group of people in every community in the country who would benefit.”
Another recent project, the DJF Foundation Health and Wellness Program at Chapel Haven, puts an emphasis on empowering adults on the autism spectrum to lead a healthy lifestyle. Walder Fiddle describes the residential support program at Chapel Haven as being remarkable, yet she notes, “There was no health and wellness component [until the DJF program began], and I think it's vital for people with special needs to learn about how to live well and exercise.” Once again, the program at Chapel Haven was designed with the intent of replication, and Walder Fiddle hopes that similar programs can be implemented by other residential providers.
The DJF Foundation's programs are designed to promote community inclusion and foster social life on the spectrum as well. Walder Fiddle describes a new theater program for adults on the spectrum age 21 and older. In true DJF Foundation fashion, the program is a partnership with grassroots theater company The Garage Theatre Group, and it is also the first theater company in the country that serves people on the spectrum. The program was inspired by a 35-year-old DJF Foundation self–advocate who wanted to participate in theater. Likewise, Walder Fiddle mentions a partnership with a New York-based organization with whom the DJF Foundation will be funding a dating and social interaction peer support program at the Manhattan YMCA. The focus of the program will be to enhance social and dating skills among adults on the spectrum.
Laughing, Walder Fiddle sums up the DJF Foundation's programmatic approach in this way: “I'm always asking [other organizations], 'Would you?'” Thanks to this persistent focus on partnership, the DJF Foundation has emerged as a leader in the field of autism awareness and support.
Awards and Accolades
The DJF Foundation has received many awards for services, but perhaps the best testament to its work is its longevity; it has survived and thrived in a time when other nonprofits and support centers have closed their doors or diminished in size due to lack of funds. Walder Fiddle herself has been the recipient of multiple New Jersey area service awards. She has been profiled in a Redbook feature on leadership, and quoted in Parade as well. Though Walder Fiddle expresses gratitude for the opportunity to reach a wider audience with the message of the DJF Foundation, she notes that her how important the formation of close relationships with individuals on the spectrum is to her. “The best honor that I can get is from our self-advocates ... having that relationship, that is the highest honor and praise. If they tell me, 'Linda, this is a great program', or 'Linda, I feel like I'm getting somewhere in life' ... That's the blue ribbon stamp of approval for me.”
Significant Gaps in Services
Though autism awareness and advocacy efforts have increased nationwide since the DJF Foundation opened in 2002, there is still a significant gap between the level of need and the practical resources and supports available for adults on the spectrum and their families. Likewise, there is a gap between what the DJF Foundation hopes to accomplish and what they experience as the current reality of life on the spectrum for many adults. Specifically, the issue of finding caring, qualified, long-term support staff is a pressing one for many in the autism community and for the volunteer-supported DJF Foundation as well.
As Walder Fiddle observes, “As more and more adults are in the community, they're only going to be successful if they have the right supports and staff. We need to address this—[by] creating tracks in high schools and universities, where working with adults on the spectrum is a highly-valued position. We need to pay support staff a higher wage. There are many caring people in the field, but they work long hours for little pay. We can create great programs, but if we don't have great people to run them, they cannot succeed.”
Looking Back and Looking Ahead
The Foundation will celebrate its 10-year anniversary in 2012. Walder Fiddle takes time to reflect on all that the organization has done, and where it is going for the future. The Foundation itself is now the same age as Daniel was when he passed away. Looking forward to the future of the autism community, she says, “The collaborative spirit needs to be fostered and further developed. We can achieve so much more together. The goal has to be foremost: How can we help the people we serve?” In that spirit, Walder Fiddle reminds service providers to constantly look to individuals with autism for inspiration and direction. To this end, the DJF Foundation has partnered with the Autistic Self Advocacy Network (ASAN) to create an "Empowering Autistic Leaders" manual. The purpose of this document, which will feature a great deal of input from self-advocates, is to support adults on the spectrum who are attending college. This resource guide is geared toward helping adults on the spectrum to form support groups and connect with other ASD students, in order to form strong relationships and self-advocate on campus. “I love that we're doing [this project] with people who are on the spectrum,” says Walder Fiddle. They're the ones that know about it, always ... We always have to honor and celebrate the voices of the people on the spectrum. We need to be continuously respectful of people, and look at each person individually. Everybody has a gift, we need to help them find it, and then foster and develop it, in the community at large.”
For her part, Walder Fiddle continues to be motivated by the individuals she serves. She asks, “How do we open doors so that people on the spectrum can have full and productive adult lives? It's a civil rights issue … It's a matter of humanity, and it's a matter for humanity. We have to open our minds and our hearts … And then open some doors, and let people [on the spectrum] walk through them. People are capable.” And with that affirmation as their central belief, the DJF Foundation moves into a second decade of service.
Society often refuses to recognize the unique person behind the autism. This doubtlessly results in great pain and frustration, but my own experiences demonstrate that it can be equally traumatizing when society fails to recognize the autism behind the person. I suffered greatly throughout my undiagnosed years. I was jailed and confined to mental hospitals for long periods of time, forcefully incapacitated by powerful drugs, constantly criticized, misunderstood, emotionally invalidated, manipulated, and abused. Please don't assume that the road of a "high-functioning" autistic is an easy one to travel.
So how did I avoid diagnosis for 25 years?
Only several months ago I knew nothing of the autism spectrum. I’m ashamed to admit it, but I’m pretty sure I thought Forrest Gump was autistic. Well, life is like a box of chocolates … you never know when you might be diagnosed with autism. I owe my diagnosis to the explosion of autism awareness in popular culture. A girlfriend, confused and annoyed by my behavior, mentioned that I reminded her of a certain eccentric, obsessive, and notoriously rude public figure suspected of having Asperger Syndrome. A month later I was diagnosed with Autism Spectrum Disorder. Whoda’ thunk it?!
My diagnosis should have come as no surprise. I was always aware of my differences, but my exceptionality camouflaged my disabilities. When I was 16 years old my family began lovingly teasing me with a “Rain Man” reference. “Scotty is def-def-definitely, definitely an excellent driver.” Oh, the irony…
I really am dangerous behind the wheel of a car. I once managed plow into three separate parked cars in as many minutes. I failed my driving test several times before I was finally granted my license. In all honesty, I really didn’t care if I was ever legally able to drive (I was far too interested in collecting vintage movie posters). However, my mother seemed to think that acquiring my license was a vital rite of passage and a necessary step towards social acceptance. I tried to justify my use of marijuana by saying the same thing—she didn’t buy it.
The morning I finally passed my test, my mother had shared a bit of advice with me that forever altered my approach to life’s challenges. “Scotty,” she said, “why don’t you act like you’re a good driver?” While initially irritated by her suggestion, I forced myself to consider it on the ride to the DMV. By God, she was right! I was neither confident nor capable, but a stranger had no way of knowing this. I could fake it!
While I no longer drive, I can proudly say that I am still legally capable of doing so. Following my mother’s suggestion, I learned to fake my way through the high school social scene. I became a highly skilled actor, playing whatever part was expected of me. I hid my deficits and eccentricities behind a carefully crafted veneer of confidence and social poise. Unfortunately, keeping up appearances meant making certain that no one got close enough to see the truth. As soon as I let my guard down, I would immediately offend, confuse and alienate those rare individuals granted access to my secret vulnerability.
I quickly grew tired of living a lie. I was desperately lonely, empty, and lost. Temple Grandin has famously described feeling like “an anthropologist on Mars.” This is not the easiest way to grow up. Neurotypical children must only turn on their televisions if they wish to see their peers interacting in familiar situations. Autistics are often portrayed in the media as caricatures. These stereotypes only exacerbate the misunderstanding and mistreatment of autistic individuals.
I recently received a letter from a woman who wanted to know how she could help her 11-year-old autistic son to fit in at school. I considered her question carefully before writing her back. This is what I said:
“It will only be a few years before your son is in high school. He may want to be cool and you may want this for him. I am familiar with the pain of social exclusion.
I learned how to fit in by studying and imitating the behaviors of my neurotypical peers. Unfortunately, most of these students had achieved social success at a price. It isn't difficult to climb the adolescent social ladder. There are five easy steps to instant popularity:
Your son will soon be pressured to take these steps. They will, no doubt, assure popularity, but those who follow them will lose their integrity and individuality in the process. High school is no walk in the park—thankfully it is brief. Your son mustn’t trade self-respect for the fleeting admiration of his adolescent peers.
If he wishes to be admired and respected by others, he must first admire and respect himself. It is never too early for him to embrace his individuality, learn from his mistakes, and move forward. Confidence and self-respect will take him far.
Always remember, fake people are faking their happiness as well.”
My diagnosis enabled me to finally understand myself. Understanding is the first step towards acceptance. I do not exaggerate when I say that my diagnosis saved my life.
It is difficult to witness the rise of autism awareness, to see parents and children being educated, guided, and provided with early intervention. I learned to survive the old fashioned way, graduating at the top of my class from the school of hard knocks. I had no real role model, no one who understood what I was going through, who had been where I was, and could teach me how to be a man. I wandered alone through my most confusing and difficult years.
I'm a better person for having endured my undiagnosed years. I blame no one for my past grief. We didn't know ...
Yet, I have so many regrets. This is why awareness is important. This is why I write. No one should be made to go through life alone, figuring it all out for themselves. I’m not an excellent driver, but that’s alright. The world has plenty of excellent drivers, but we could use more excellent autistic writers. Every time I send awareness and understanding out into the world, a little regret loses its grip on my heart, and slips away … There went some, just now …
When an individual with autism is engaging in problematic behavior, such as self-injurious biting, name-calling or lashing out, what can parents, teachers and other support team members do to help? Creating a Behavior Support Plan (BSP) can help families who are feeling defeated by difficult behaviors. With the help of professionals, parents and support teams can craft and implement behavior support plans that respect the individual's dignity, promote consistency and enable the individual to choose different behaviors.
For some parents and caregivers, this piece will serve as a review of Behavior Support Plan principles that they have encountered previously. However, addressing the principles of behavioral support in an adult context is an important, often-overlooked step; strategies must be age-appropriate and the individual with autism may well be actively involved in the creation and implementation of their own BSP. These plans are not limited to children, as they play a significant role in the success of adults on the autism spectrum. For parents and caregivers who are unfamiliar with the principles of BSPs, this article will serve as a primer.
What is a Behavior Support Plan?
Behavior Support Plans are created for individuals when certain aspects of the individual's behavior become problematic. When certain behaviors consistently prevent individuals with autism—with or without intellectual disabilities—from desirable outcomes (learning, growing, maintaining personal safety and connecting well with others), BSPs can help the individual's team to respond wisely. BSPs are not solely for adults on the autism spectrum; they are meant for any individual whose behaviors consistently interfere with their ability to lead a fulfilling life. For example, informal BSPs may be employed for issues such as anger management, emotional eating, and compulsions of various kinds.
At its core, a BSP is a system set up to enable significant members of an individual's life to change their inconsistent, emotion-based response to problem behaviors to ones of forethought and consistency, in hopes that their new responses may, in time, alter the individual's problem behavior. In this way, BSPs are also an important bridge toward healthy relationships. At their best, BSPs represent a pre-meditated effort to respect and care for an individual. As Charles Clark, an individual who lives in a residential placement in Virginia, says of his informal behavior support plan, “It's my Love Plan. It's how my family members show me love.”
It's important to distinguish between a formal BSP and an informal BSP. Informal BSPs can be created by family members, teachers, or caregivers who understand the basic principles of behavior management. Formal BSPs, however, are governed by a stricter framework. Formal BSPs are typically written by psychologists, therapists or behavior analysts, and are implemented by an individual's support staff. Furthermore, formal BSPs are required in certain circumstances. For example, in the District of Columbia, an individual with intellectual disabilities who is taking psychotropic medications and receiving residential services through a Medicaid Waiver must have a formal BSP in place, and it must be reviewed annually. Regulations such as this are in place to prevent abuse of psychotropic drugs, and to ensure that behavioral strategies and supports are being utilized to address problem behaviors.
The Function of Behaviors
One of the foundations of thinking about supporting an individual with autism behaviorally is to understand the idea that each behavior has a purpose, or a function. Some behaviors, for example, may be intended to access a desired item or to avoid something unpleasant. Other behaviors may be attempts at gaining attention. Others are inherently pleasing to the individual. Knowing the function of a problematic behavior guides the creation and use of a BSP. (The function of a behavior is not the same thing as its origin. In other words, the origin of a behavior may be a problem with sensory integration or trauma such as bullying, but the function of the behavior may be to escape a current situation.) To this end, a professional may conduct a Functional Behavior Assessment (FBA)—a data-based analysis of the behavior—to help understand how to proceed in changing it.
The ABCs of Behavior Support
How does the support team gather data and document instances of problem behavior? A simple tool such as an “ABC” sheet (Antecedent, Behavior, Consequence) is often used by support professionals to log instances of problem behavior, and report on the essential elements of the event.
To complete the first section of the form, parents, staff and other support team members log the antecedents—that is, the things that came before—to the behavior. They ask themselves questions such as: What was going on before the behavior occurred? What was happening in the surrounding environment? What events or actions directly preceded the behavior? Was there a change from the usual routine? Had the person recently been ill? Were they hungry? They ask questions to determine what the individual's external and internal environment was like before the behavior in question occurred.
An example of a behavioral antecedent might be an obvious event, or trigger, such as a fire alarm, flashing light or other disturbance. Did something occur that caused sensory discomfort or overload? Or did a change in routine or plans impact behavior? The setting event to a problem behavior might be something that seems innocuous to an observer; for example, the behavior may be triggered by having one staff member assist them instead of another. Different individuals have different physical and psychological triggers, and what unsettles one person may not affect another.
As Richard Boesch, a clinical psychologist and supervisor for a DC-based behavioral support team says,“There are certain people who, because their threshold for stimulation is so low, may get set off by a fairly 'normal' level of sensory input. However, there are also people who have really high sensory thresholds, and their challenging behavior may be due to needing greater levels of [sensory] input.” In describing this second type of individual, Boesch uses the example of an individual with autism who needed to go outside and swing throughout the school day, because the rocking motion of the swinging provided them with the sensory input and stimulation they needed to remain calm.
Documenting antecedents is a vital part of preventing problem behaviors, because it allows support staff and parents to understand aspects of causation and to see the beginnings of a behavior. A specific individual's problem behavior may have a myriad of triggers, or there may be just one. In addition, the antecedents may be external and visible, or may result from an internal process, such as a biochemical imbalance or a psychological struggle. Whatever the probable antecedent, data collection can help the support team get a better idea of what is actually taking place. Once the antecedents have been identified, the support team can begin setting up systems to prevent further instances of problem behavior. “Really beginning to understand the setting events, the triggers that lead to behavior, is where most of the effort needs to be focused,” observes Boesch.
Once the antecedents have been examined, the support team must look at the behavior itself. What, exactly, is the individual doing that is problematic? On the ABC sheet, staff and parents describe the behavior in objective terms. What took place? What did the individual do or say that was problematic? It is necessary to describe the behavior objectively, writing, for example, “The individual threw a book,” instead of, “The individual was angry.” The first is a statement of observation; the second is an inference based on observation. The degree of difference between the two may seem slight, but it is significant; statements of observation can help educators, staff and parents to examine the problematic behavior based on data rather than suppositions about the feelings of the person with autism.
Finally, the ABC sheet asks the staff member or parent to examine the consequences of the behavior. They need to ask: What happened after, or because, the behavior took place? Was the individual ignored? Did they receive a great deal of attention, positive or negative? Did the behavior cause them to gain something desirable? Note that the term “consequence” does not refer to a punishment. It refers to the results of the behavior, whatever they may be. As with antecedents, this is an important section because it can help clue the individual's support team into why the individual exhibits their particular problem behavior. For example, does an individual's swearing always result in the attention of teachers and students? If so, the problem behavior (swearing) is resulting in a consequence that the individual finds pleasurable. In behavioral terms, the behavior is being “maintained” by attention as “reinforcement.”
Crafting a BSP
When creating a BSP, it's important to remember the basic principle governing behavioral supports: No one can force or coerce any true, lasting change in another person's behavior. One can, however, respond in such a way as to promote a different behavior. Additionally, when parents and educators begin a BSP, expectations for rapid positive change often arise. However, behaviors formed over long periods of time do not disappear overnight.
As a person with autism approaches adulthood, BSPs that were implemented during childhood may no longer function well. Additionally, families and support teams may now be able to actively involve the ASD adult in the formation and implementation of the support plan. If the person with autism is able to be a participant in creating and implementing the BSP, it is often very helpful for parents and caregivers to enlist the support of a professional. Allowing adults to work alongside professionals to form their own plans gives them a sense of ownership and fosters greater independence. The process often allows adults to develop a greater sense of self-awareness. The professional may be able to help the person with autism understand what’s triggering and maintaining the problematic behavior and may gain insight into what responses from others are most helpful. Unlike BSPs that are put in place for children (who are often unaware of the BSP's existence), BSPs that are put in place for adults have greater potential to be a collaborative effort. For instance, adults with ASD may be able to read and review their plans regularly, document their own behaviors, or assist support team members in filling out ABC sheets. Tasks like these help individuals to remember the purpose of the plan, and be accountable for its implementation. These collaborative plans are often most successful, as many adults on the autism spectrum can offer their support team valuable insights into their particular needs.
Implementing a BSP
The initial stages of a BSP may be the most difficult for the individual and their support team alike. Based on the analysis of the function of a problematic behavior, the BSP will outline what should happen when the behavior occurs. A good BSP will focus not only on decreasing problematic behaviors, but on increasing alternate acceptable ones. Removing whatever has been maintaining the problematic behavior can actually initially result in an escalation of that very behavior. For example, when parents, teachers and support personnel begin to ignore a behavior that was maintained by attention, individuals may actually increase the frequency and intensity of problem behavior, hoping to evoke the desired response once again. (This is often referred to as an “extinction burst.”) Providing an alternate, acceptable behavior often increases the probability that the individual will abandon their previous problem behavior. According to Boesch, “If you're just trying to extinguish a behavior by removing reinforcement, [the individual] will try harder. If you're providing an alternate behavior, you might not see the same surge.”
Accurately assessing the function of the problem behavior will also impact the progress of the BSP. Alternate behaviors are hard to provide without understanding the function of the one that needs to be decreased. For example, if the support team believes that the individual's behavior is attention-seeking, when it is actually a behavior designed to avoid something unpleasant, providing an alternate attention-seeking behavior will not be helpful. What should parents and support teams do if the function of an individual's problem behavior is not discernable? Boesch states, “It may take time to sort out what additional things are going on that are contributing. Try not to be frustrated, maintain consistency, and see what you can glean from situations where the behavior does occur.”
In simple terms, responses to behaviors—problematic or otherwise—come in two basic forms: reinforcing and punishing. Reinforcing responses are those which increase behaviors, while punishing responses decrease behaviors. Everyone has their own unique constellation of “reinforcers” and “punishers.” It is important that families and support teams work with professionals to understand what the individual with autism finds reinforcing. These are the things that will drive the BSP’s plan for behavior change.
When creating and implementing a BSP, consistency of response is key. When support teams meet to create BSPs, psychologists and team leaders emphasize the need for uniformity, with good reason: If an individual's behavior is rewarded in one setting and ignored in another, the problem behavior may actually become more entrenched. This phenomenon is due to the fact that the strongest type of reinforcement is “random intermittent reinforcement”—that is, occasional, unpredictable reward. To understand this, think about playing a slot machine. If every time a player inserted a coin and pulled the arm the machine spit out $5, the player would get quickly bored and stop playing. But if on some occasions the machine gives nothing, but on other occasions the player wins a jackpot, the player is more likely to continue to play. Boesch notes, “It just takes one person to keep a behavior going [via their intermittent reinforcement]. That being said, it's almost impossible to block this entirely, and so it's important to cultivate the alternate behavior. Make another behavior more valuable, more reinforced.” For this reason, it is important for support teams to maintain consistency, offer alternate behaviors, and create realistic plans, with reinforcement plans that can be maintained over time and across people and environments.
Further Support Principles Specific to Autism
The principles of behavioral support remain consistent across varying levels of intellectual and emotional intelligence. However, a few principles are helpful for offering behavioral support to individuals with autism specifically.
First, individuals with autism often have challenges in the area of interpreting emotional content. As such, making inferences about another person's feelings based upon facial expressions and gestures is a constant challenge. In order to offer behavioral supports for individuals with autism, particularly individuals who struggle with violent or self-injurious behavior, it is vital for support staff and family members to remain as calm as possible. When they do so, they not only give themselves a better chance of responding rationally, but they also ease the struggles of the individual that they are assisting. For an individual with autism, trying to interpret another person's heightened emotional state, while simultaneously maintaining calm behavior in a situation they find overwhelming, is extremely demanding, if not impossible.
Next, when supporting an individual with autism, it is imperative that sensory issues be taken into account in the BSP. Sensory issues are often triggers, and as such, individuals need ways in which to calm their bodies and minds. For example, the opportunity to calm down by utilizing a quiet room or a makeshift “squeeze machine” may prove invaluable for an individual with an overstimulated sensory system. By the same token, providing opportunities for individuals to receive higher levels of sensory input can be equally beneficial, as in the previous example of an individual who needed the rocking motion that swings provided to remain calm and focused.
Finally, behavioral support plans are designed with the individual in mind, but they can also help support team members. Individuals with autism may need to engage in behaviors that society does not consider “normal,” and this need can be difficult for some loved ones to accept. As such, a BSP allows team members to focus on their responses to specific behaviors. This renewed focus can alleviate the team member's anxiety, and reduce their desire to control (or "fix") the individual with autism's behavior. In this way, Behavior Support Plans can indeed become “Love Plans,” empowering support staff and family members to nurture relationships by responding calmly and consistently to an individual's problem behaviors.
Margaret Fernandez believes two colors of thread intertwine to define who she is as an adult with Asperger syndrome.
“The gold threads in my cloth are God, and the silver threads are the spectrum,” said Fernandez, 32, of Fredericksburg, Va. “I rely on Him in every woven piece of my being.”
Religious involvement has served as a bridge for Fernandez throughout her life to connect with those without disabilities. She improved her eye contact while volunteering through her Catholic Youth Organization as a young adult. She also gained confidence singing in the church choir.
“I learned to project my voice over time and grew more and more comfortable standing in front of the congregation,” she said. “When I was very little, I was quiet and didn’t speak.”
These activities prepared Fernandez to later run a booth at a business conference and interact with difficult customers without retreating.
Fernandez is not alone in tying her growth as an adult with an autism spectrum disorder to her faith in God and dedication to religious practice. Many adults on the spectrum enjoy inclusion with neurotypical peers in their religious communities and credit religious involvement for improving their socialization, communication and sensory processing.
Such spiritual adults tend to thrive on the consistency and organization worship brings, Fernandez said. “In church, we follow a very close routine and the services are well planned,” she said.
And worshipping with neurotypical participants allows such adults to learn key skills in a natural setting. “The ability to learn from our mistakes, to learn how things are done in a patient, calm way without the stress of being reprimanded, the ability to share and communicate with other people in a uniform and congenial way, is priceless,” Fernandez said.
David Bennett’s behavioral challenges have lessened over time in part by participating in regular services at his Jewish synagogue. Bennett, 17, of Miami, used to have to sit in the back of the temple because of his outbursts and fidgety behavior. Now he often sits in the front row. “I am calm and happy” after praying, he said.
One of the rabbis at temple has asked Bennett to carry the Torah at services a couple of times now, thrusting him into the spotlight — and social interactions. “It was very heavy,” Bennett said.
“I was confident he wasn’t going to drop it or wander off with it,” said Rabbi Alan E. Litwak at Temple Sinai in North Miami Beach, Fla. Most of the members of the congregation know Bennett has autism, and accept him. “He is a lesson personified in recognizing the divinity in every person,” Litwak said. “We are created in the image of God, therefore, everyone is perfect in his own way.”
The benefits of religious activities reach beyond the walls of places of worship. Zac Zepp, for example, has taken cues from other young adult members of his Presbyterian church to appropriately dress and fit in with his peers at school and in the community.
“The way you dress defines who you are to other people,” said Zepp, 17, of Tallahassee, Fla. “I learned from my friends that if your clothes don’t match who you are, people won’t connect with you as well. You have to be comfortable with who you are.”
Zepp’s long-time friends have also exposed him to popular movies and music. This has better armed him for social interactions.
“I didn’t know how to start conversations as well as I do now,” he said. “Now I like the social part of church and it’s not really awkward anymore. I can contribute more to conversations. I have a lot more friends now.”
Just as many do outside religious walls, some individuals with autism work with behaviorists early on to better integrate into their congregations and benefit from the socialization. A behaviorist helped Jonathan Farris behave more appropriately during devotionals. Now 20, the Tallahassee native attends a college-level church group, where he makes fewer outbursts. He also now attends overnight church retreats, where he enjoys meeting new people.
“I used to get too hyped up and interrupt people,” Farris said. “I’m more comfortable now. It helps so I can have friends.”
Tabitha Jozwick, 30, of Galesburg, Ill., also sees church participation as a way to connect with people outside her immediate neighborhood. Jozwick does not disclose to everyone that she has autism, but she usually warns people she does not like being hugged without first being asked.
“I do participate in the hugs and handshakes after a service,” Jozwick said. “I just don’t do it with everyone yet.”
Jozwick attends an Apostolic Pentecostal church because its doctrine of one God with three roles is easier for her to rationalize than the Trinity doctrine at another church she attended. “It’s a lot easier [for me to understand] the Apostolic Pentecostal belief of God because lots of people have three different roles and there are not three of them,” she said.
It’s only natural for people with autism to question the existence of God, just as any nondisabled person might question it, Jozwick said. Some may even blame God for “making” them have autism. Not Jozwick.
“[Religious worship] allows me to accept my autism as part of me, not something to be mad at God for, because there is a reason He made me autistic,” she said. “I am at peace with my life when I go to church services. Everybody needs God in his life, whether he has a disability or not.”
Steps to Spiritual Participation
Individuals with autism and members of the clergy suggest you take these steps to pave the way for an inclusive religious life:
Besides taking a social skills class to cover the basics, what can autistic adults do to enhance social comprehension? How can our families and the professionals who work with us be sure that staying home to play video games alone is a true choice and not just a default option because we don’t know how to make and keep friends?
Many of us on the autism spectrum are strong visual thinkers or at least respond positively to visual supports. Research shows, for example, that Social Stories™ can be effective tools for decoding social nuances and reinforcing positive social behavior. Social Stories™ visually explain the social world in a way that is both efficient and helpful. The “steps” of a social action or the sequence of a consequence are demonstrated. This enables autistic individuals to “watch” what happened in reviewing a situation to better plan for next time or to predict what might occur and what might be suitable options for an impending event. Many books have been written about creating and using Social Stories™. Most of the materials are for geared for children but can be easily adapted for adults.
Even informal visual supports are useful for addressing the challenges of our unique autistic profile. Take, for example, the concept of maturity. I hear parents all the time tell their teenagers, “You need to be mature.” What does mature look like? What does it sound like? Do you have to do “being mature” all the time, or just around teachers and parents? What about at a football game on the weekend? Cut pictures out of magazines that break down abstract concepts like “maturity” into useful visual examples of the behavior that is expected and include clues that delineate when, how, and why we do these adult behaviors.
Research also strongly suggests that having a peer navigator can be an integral aspect of imparting “hidden curriculum” wisdom and enhancing success especially at school and at work. Our neurotypical family friends, siblings, cousins, and co-workers can all be tapped for a wellspring of social information that professionals often simply do not know. When I heard some teenagers say, “He’s ill,” about a member of the group, I thought they meant the student they were referring to was sick. Apparently, “ill” now means “cool.” The first time someone asked me, “Do you want to go out?” I couldn’t fathom why because it was pouring rain. My sister, two years younger, instantly understood the question.
Social Stories™, visual supports, and peer navigators are just three of a plethora of approaches to teaching social cognition and social nuances. Again, while most of the research and programming focuses on children, strategies can easily be adapted for teenagers and adults. The salient point of any of these methods is that we need to go beyond standards of etiquette (say hello) or typical conversation (ask about the weather). What we really need to know is why people do what they do, why they say what they say, and why they react to us and each other in certain ways.
Facility with Emotions: Another Key Social Skill
Many of us on the autism spectrum do not intrinsically recognize our emotions or know how to use our feelings to make wise social discriminations. This may seem unusual to neurotypicals because non-autistic people appear born wired to understand their feelings and how to skillfully use emotions to steer themselves through life. But those of us on the spectrum must learn step-by-step that if your heart is racing and your stomach “drops” these are nervous signals that can be used to pick a course of appropriate and potentially life-saving action in social situations: It may be time to leave or time to summon emergency assistance.
Regulation of emotions is an often overlooked component of social skills curricula but is a vital aspect of adult life. When we do learn through effort and practice how to identify our emotions and accurately scale the “amount” of emotion we are experiencing, we can more confidently know what to do. In her book Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World, Teresa Bolick explains how to make and use a feelings chart, an important visual aid and tool. Though some of her books are geared toward children, all of Kari Dunn-Buron’s books are useful for teaching autistic adults how to scale emotions and tailor reactions adeptly, thereby improving social success.
It is important to remember that regulation works both ways. We need to know that a small amount of frustration, such as tipping over a box of paper clips, does not warrant the same reaction as a large amount so that we can tailor our responses to the events of everyday life in age-appropriate ways. But because we do not adeptly send out nonverbal signals used commonly in social interactions, we may need regulation strategies precisely so we can communicate to others that we are absolutely terrified even if we have no facial expression, or that we are thrilled to be part of a team project even if we do not display enthusiasm with our body language. Don’t leave neurotypicals guessing: Use techniques like emotions scales not just to modulate your reactions and behaviors but also to communicate your experiences.
The Neurological Limit: Stop-Gap Strategies
While ideally all of us on the autism spectrum will learn both the basics of socializing and the complexities of social cognition, we are still plowing through the world with autistic brains. This doesn’t mean learning comes to an end point. But we may need tailored strategies to keep ourselves safe.
My most popular strategy is the Safe Activities List. First you pre-determine a list of activities that are usually safe. Then, if someone approaches you and asks you to do something, you can politely decline and offer to do something on your Safe Activities List instead. You don’t have to completely ruin your social life by saying no all the time. When I was 14 years old, for example, a group of kids asked me out of the blue one day to get a soda after school. Since I didn’t have any friends, I was thrilled and said yes. Right outside the school building, their buddies were waiting, jumped me, and took my wallet.
I got my wallet back a few moments later. I don’t think they were awful kids. I am sure they just wanted to pull a prank. My sister said later, “Couldn’t you tell they were up to no good?” Succinctly, no. Maybe social skills training could have increased my ability to interpret their voices, their expressions, their body language. But since the social world is so vastly changeable, a Safe Activities List would have prevented at least some damage. I could have said, “I’m busy today but do you want to eat lunch together in the cafeteria tomorrow?” A sincere person will usually respect you and agree. A person with ulterior motives may increase the pressure and so the social clues may become more obvious–but if not, your Safe Activities List can reduce your risk level.
My book Life and Love: Positive Strategies for Autistic Adults includes a whole chapter on social safety strategies. Whatever mix of strategies might work for you, the point is not that we are limited in our capacity to grow and learn over time. We must, however, face the realities of our unique ways of perceiving, interpreting, thinking, acting, and feeling that can get us into trouble in some contexts while we acknowledge that any deficit can simultaneously be a strength in a different context.
Attacking Social Vulnerability
I hope families, adults on the spectrum, and professionals reading this will be inspired to create the right mix of social skills training, comprehension strategies, and safety protocols needed to best promote a healthy and happy social life. But beyond all the strategies and lessons, it is vital to reduce social vulnerability, too. Frequently individuals on the autism spectrum leaving childhood and entering adulthood have no history of positive social interaction—none of those memories to draw on as you step both boldly and timidly into adulthood. Childhoods are spent in the OT office, not in the backyard with neighborhood kids. While other teens are going on dates and getting their driver’s permits, we are visiting the tutor to organize our school notebooks. Instead of starring on the basketball team, we escape from the gym for fear of being teased. We don’t remember our first friends –we remember the first time we avoided the school bully successfully.
When a person has no positive social experiences, the individual is at great risk for isolation, low self-esteem, mental health problems, and poor decision-making. One young man on the spectrum racked up thousands of dollars of credit card debt because an online “webcam” girl showered him with attention and asked him for lavish gifts in return. He didn’t realize he was being used. He just said, “No one ever wanted to talk to me ever before in my life.”
Parents, professionals, and teachers may need to help adults initiate and build upon social experiences that attack this type of sad and unfortunately common social vulnerability. This doesn’t mean the person will never experience loneliness or set-backs. But if you have some friends, some positive social outlet, some way to relate to other people that is satisfying, you are less desperate and make better choices for yourself in the long-term. This doesn’t mean violating a person’s social style. Many of us on the spectrum don’t want to or just can’t spend loads of time with other people. That’s OK. We still need to make the kinds of connections that will sustain us through life’s ups and downs.
I know a man who watched game shows all day and was extremely lonely to the point of depression. He heard about the Museum of TV & Radio nearby and started volunteering. He met a few others who are equally enthusiastic about TV shows, and he is much happier. No, he doesn’t “hang out” with them after volunteer hours or call them up on the phone. But he’s less isolated. He’s having fun. He’s out of the house. And he has made connections to others that have meaning and value to him, as he defines this.
Can’t think of anything to do? This is where another common autistic strength can come into play. What are your special interests? My local photo store offers a six-week photography class for $25. Many supermarkets offer free classes from how to make sushi to how to brew tea. A bookstore down the street has evening author talks. The university has star-gazing nights when they open up the space telescopes to the public. Volunteer. Take a math class at a community college just to keep your brain sharp. Public libraries usually have a slew of activities. Whatever your interests are, I am sure you can find something!
Remember: You don’t need perfect social skills for these activities. You can assume that the others in attendance share an interest in the activity otherwise they wouldn’t be there, so you can just talk about what you are doing. Participating will allow you to practice social skills like initiating conversations in an environment that is safe, conductive, and healthy. You may think based on what you see “popular” people doing that you should be looking for gorgeous people with glamorous lives. But the vast majority of people do not live like that. If you try a few activities that you enjoy, you will—over time—meet ordinary people who have similar interests.
One last note: In our culture, people are under enormous pressure to fall in love. Almost every song on the radio is about romance! But the fact is, plenty of people, on and off the spectrum, do not date and do not fall in love for a wide variety of reasons. Many adults are satisfied focusing on their careers, their hobbies, and sometimes their pets. Don’t succumb to the pressure to engage in social or romantic activities if you don’t want to or if you aren’t ready. You can use some of the strategies I mentioned above to combat loneliness. You can have a happy, comfortable life on your own.
Everyone has some memory that continues to thrill us years later: our first real friend, the first time we went on a date, the time we received an award at work. These memories are sweet and they have a direct impact on our confidence. Human beings derive not just pleasure but also self-respect, a sense of dignity, and a sense of meaning from succeeding socially.
Almost always in my line of work as an autism consultant and educator, the biggest stereotype about autistic adults that I encounter is that having autism-related social challenges means no socializing. Autism is automatically correlated to a preference for isolation or a reduced interest in social contact.
But in reality, individuals on the autism spectrum are, after all, people—human beings with the same hopes, dreams, concerns, and capacity to love as everyone else. I have rarely met anyone—on or off the autism spectrum—who is not comforted by the presence of others, and who does not seek to relate to others one way or another. With this idea as the starting point, the following article explores the impact of social challenges on relationships of all sorts without ignoring corresponding strengths. Strategies to enhance social fluidity and success are also discussed.
Socializing: What Is It and Why Is It So Hard?
Of course I knew the rule, don’t talk to strangers. But the usher at the movie theater wasn’t a stranger anymore, right? After all, we had talked for a few minutes. When I was invited into the little booth to see the movie reels, I couldn’t read the social signals indicating potential trouble.
Every act of social interaction between two people or more is a complex series of delivering and receiving information, making adjustments based on data gleaned, and following through on decisions about what to do. Think about making a friend: First, you have to go somewhere or be doing an activity where you might meet someone to befriend. Then, you have to decode often very subtle cues that another person might want to be your friend. The process of becoming friends involves initiating communication, utilizing and processing verbal and nonverbal language, judging friendship potential, regulating and expressing emotions, sharing interests, establishing rules for joint activities, demarcating interpersonal boundaries, and navigating conflicts. And that is just a friendship! Imagine the added layers of complexity if you want to find someone to date!
Autism-related differences in the wiring of the brain can make socializing an arduous process. Everything from sensory issues to social cognition can factor into the difficulty. Brain-based differences impact the ability to perceive social information, manage and complete social decisions, make social judgments, and protect ourselves during the myriad moment-by-moment fluctuations that are an inherent aspect of human interaction.
Autistic individuals tend to have difficulty generalizing broad rules to specific situations that are in our minds unique. Providing a teenager with dictums such as don’t talk to strangers or be nice are layered with nuances that require assessment of “on the spot” gray areas: Someone can still be a stranger even if you’ve talked for a few moments, and you should not be nice to robbers. How do children learn when to apply a rule and when the rule might or might not stand depending on the social context? Usually by experiment and osmosis, but for children and adults on the spectrum this deficit in generalization can enormously impact peer relationships and social outcomes.
Additionally, adults on the autism spectrum often have a strong tendency to miss nonverbal clues like tone of voice, body posture, or facial expressions that deliver important social clues. Exchanging signals that indicate level of social interest, amount and type of emotion, genuine concern or ulterior motive, is so natural and ubiquitous that neurotypicals don’t even realize they are zipping signals back and forth all the time. Because autistic adults don’t necessarily send the right type or intensity of signals, because the timing of our signals may be off, or because we may fail to send any signal, neurotypicals often conclude erroneously that we are disinterested or unfriendly. Conversely, if we are not adept at scanning and interpreting nonverbal signals, we miss clues that might indicate the potential for friendship or the potential for danger.
Autistic adults tend to understand language so concretely that the subtle meaning of social information may escape us. One young woman on the spectrum told me she didn’t need to use birth control because her mother and her priest both had told her, “You can’t have children until you’re married – ” as in, the process can’t work until you are married, so you don’t have to worry. And one young man on the spectrum argued vociferously about the temperature of his classroom after some girls told him he was hot. The teacher sent him to the principal’s office in a bewildered state—he had no idea why he was in trouble for explaining that the classroom was cool.
Also, social situations are fairly open-ended. In the social world, it is impossible to predict outcomes, come to sure conclusions, or chart a fixed course. Many of us have trouble enough picking what to eat from a menu. You can’t make a chart and plot what will happen if you date Bob, Bill, or Sam. If we can’t see specific reasons for picking one course of action over another, we may lack the ability to make the best social choices.
Furthermore, we often have only a vague idea of how we feel. This can be a problem when we do not know how to use this self-knowledge in social decision-making. A lack of facility with regulating and expressing our emotions results in slow or out-of-proportion responses and inadvertent advertising of our vulnerabilities, too.
Lastly, many of us experience face blindness. This can be mildly embarrassing when we don’t recognize a neighbor or this can be a serious safety issue when we can’t recognize someone who teased, bullied, or attacked us in the past.
Why Not Just Send Autistic Adults to Social Skills Class?
A group of researchers based at the University of Indiana published a meta-analysis of research studies on the efficacy rates of social skills classes. The data indicate that social skills training programs are ineffective in the long-run. While the study suggests that intensity and implementation of the classes plus identification of deficits are factors, the answer is also at least partially because autism is neurological.
We can usually remember the lessons, rules, and facts we are taught regarding basic social etiquette. In this sense, social skills classes can be extremely valuable. No one is suggesting to scrap social skills classes altogether. It is easy enough, for example, for me to memorize that when I walk into a room, I should say a positive greeting if I discover other people in there.
But the deeper cognitive, social, and linguistic challenges associated with autism just do not go away by taking a class. While I will likely remember to say, “Hello,” to you if I see you, this is no guarantee that I will say hello with the right tone of voice, or that I will know what to do if you say, “Bug off!” or if you rush over and give me a big hug. The social world is too varied and random to conform to a set of rules or procedures. Every social moment is new, singular, and met with our unique autistic profile.
Building on Strengths: What Autistic Adults Have to Give
Too often, the microscope is focused on all that is wrong with us. Yet, autistic adults actually have much to contribute to friendships, relationships, and families. Take, for example, the deficit in nonverbal language. Much misunderstanding results because we do not always use the common currency of social signals adroitly or at all. But “the autistic way” could actually benefit society. I have observed neurotypicals send out very subtle signals that, for example, indicate they need help. The person will not say distinctly, “I need help,” but will rather resort to every other possible means of conveying the same idea. If autistic people do not compute the top-secret coded messages, then we are labeled lacking in empathy or self-centered. But why is the fault always with our reception and not with neurotypical delivery? I posit that our society needs more direct communication and a lot less presumption of meaning.
Also, our need for personal space or quiet time is often misinterpreted as a lack of social connection. I have observed neurotypicals in relationships of all sorts and a premium is placed on togetherness. It is OK to go to a museum or spend the afternoon watching cargo ships in the harbor alone. This is something we can teach neurotypicals: Time for your own activities and interests allows you to develop yourself. Then you have more of “you” to give.
Although I could give a plethora of examples of how our autistic “deficits” can be strengths when you flip your viewpoint, one more comes to mind: sensory issues. Over and over again I hear neurotypicals say something like, “Our autistic family member can never go to the mall without a complaint! She says the noise is too overwhelming! It ruins our fun!” But indeed, why does the music need to be so loud to shop for clothes? Maybe a little more peace and quiet would do all of us some good to calm our jangled modern nerves.
All human beings struggle to find love and happiness. Autistic adults are no exception. To equate social challenge with no socializing does a disservice to autistic adults. That being said, people do not have to engage socially in typical ways. A gentleman attended a social group for adults on the autism spectrum for an entire year and the whole time he sat in the back of the room on a couch by himself and did not say one word. Then, on a holiday, he brought in cupcakes for everyone. Surprised, the group leader said, “I thought you weren’t enjoying yourself.” The man replied, “No! This group is the best thing that has ever happened to me,” as he took his usual spot on the sofa.
The less neurotypicals and autistic adults assume about each other, the better. Deploying autistic strengths by making connections to others based on special interests, by revitalizing relationships with direct communication, and by valuing the autistic way of living and loving will, commensurate with sensitive social skills support, help adults on the autism spectrum reach the social goals they set for themselves. In summary, when preparing our sons and daughters, loved ones, students, clients, and ourselves for the social world, we must consider how autistic people hear and process information, deal with emotion and choice, and prefer to communicate and socialize so that we can all promote the healthiest and least risky paths to friendship, outreach, and love.
My name is Caroline McGraw, and I have a confession to make: Once upon a time, I wanted a "normal" brother…and a "normal' life." My younger brother, Willie, has autism. As a child, I used to pray that my brother would wake up one morning with all traces of autism gone. I wanted normal, but I never got it. Instead, I got something better. I got original. I got hilarious. I got creative. I got a brother who loves to run, a boy who would jump into the duck pond, chase the geese and leave us in the dust. I got a brother who looked up to me, who thought of me as a princess. I got Willie. Later on, however, I also got violent and self-destructive. Willie went through a very challenging period in his teenage years. During that time he was out of control, raging, yelling and weeping for no apparent reason. My family struggled to find a treatment that would help him; we fought to protect ourselves, to protect him from himself. Medication has helped, as have behavioral supports and a new day program. Even so, there are nights when he cannot sleep; days when he explodes in anger. In other words: Willie’s struggle is a storm that has abated, but not entirely ceased. During those years of destruction, I found myself questioning whether or not I still loved my brother. I questioned whether or not the boy I loved was still alive inside the man I feared. And when I couldn’t answer those simple questions, I seethed with anger. After a particularly difficult evening at home, I walked upstairs, saw my brother’s guitar and simply started smashing it against Willie’s wooden bed frame. I was so, so angry. I so, so badly wanted him to stop acting crazy. I wanted him to change back into the brother I knew. After, I felt bewildered, astonished…and relieved. While the wood was splintering and the strings were snapping, I’d realized…I could not change him. I could not change my parent’s decisions. I was powerless to change any of those things…but I’d done something I needed to do. I’d released some anger I needed to release. I’d stopped fixating on what I wanted to change about him and started letting myself feel what I felt . That day, I arrived at a wonderfully difficult realization: I can only change myself. Ironically, this was the first moment in ages at which I could feel empathy for my brother, who had so much rage inside of him. It was small, but it was a beginning. Sitting amidst the shards of a broken guitar, I took my first step on the road to loving my brother as he was, not as I wished he would be. And that first step has brought me to places I never dreamed I'd go. I currently serve as a Program Director for a non-profit. I help to create homes where people with and without intellectual disabilities share life together. Wthout Willie, I don't think I'd have ever ended up there . I graduated from Vassar College in 2007, and instead of jumping into the world of publishing like a good English major might, I decided to go and serve people with disabilities for a year. Then two years. Now, it’s been four years, in part because something unexpected happened: I didn’t want to leave my job. I was learning and growing in ways I didn’t expect. The people I came to serve were serving me; they were opening my heart and teaching me how to live fully. What was meant to be a year of service turned into a career of passion and compassion. If you count my time as Willie’s sister, I’ve been living and loving people with intellectual disabilities for twenty-five years. Even so, I feel as though the journey’s just begun . I can’t call the path I’m walking "‘normal"…but then again, I wouldn’t want to. Not anymore.
Though my parenting experience is not unique, I have often found myself feeling alone and in uncharted territory. I have a 16-year-old son with Autistic Spectrum Disorder. This specific diagnosis wasn't determined until three months before his 16th birthday. Prior to that, he just floated from kind of being a little of this, to kind of being a little of that. He was first diagnosed with a learning disability at the age of three, but this "diagnosis" contained the term "Not Otherwise Specified." I was left asking, “Well, why can’t you be more specific?” I was often at a loss to find a socially acceptable way of describing my son. At times, it seemed that making a giant sandwich board to hang around my neck explaining his challenges would be a good way to go. Strangers would be so involved in reading the list of cognitive dysfunctions and sensory integration issues that they might not notice the meltdown in the produce section. But here’s the thing: When he was given this diagnosis, it did not unlock the gate to a world filled with people just like my son, and I wasn’t handed a roadmap leading me to his fullest potential. I felt I had become an official member of a club, but the clubhouse felt a little empty. Back when I was presented with my toddler’s “non-specific” diagnosis, my reaction was, “This can't be an accurate reflection of my son!” So I asked a child psychotherapist to provide feedback on the results provided by the public school system. (My assumption was that any testing done for free couldn’t be good testing, so I set out to support my assumption.) The psychotherapist sat with my ex-husband and me, hardly glancing at my child lining up plastic animals on her bookshelves, and proceeded to tell us that he did not need the Special Ed Pre K recommended by the testing team. No, what our son really needed was for my ex and me to enhance our parenting skills. I should carry a basket around at the end of every day and pick up toys so I won't feel overwhelmed by clutter. Alrighty then. If it had been my mother offering this advice, I would’ve hung up on her. Instead, I wrote this woman a check. I often wonder how much money hopeful parents waste on “professional” advice just in an effort to find an answer they can live with. Since less clutter at the end of the day wasn’t having an effect on my son’s prognosis, it was time to consider treatment options. I went from the “There’s nothing wrong with him” to “Oh, he'll grow out of it." When my son was six, I remarried and we moved abroad. A mainstream setting was all that was available in English, and I was convinced that the previous two years in a Special Ed setting had “fixed him.” I was sure that he would catch up to his peers any minute now. Mind you, I had no test scores supporting my conviction but denial can be habit-forming. When we looked for schools abroad, one school accepted him without hesitation, so I felt this justified my belief that he was ready for a mainstream classroom. With the aid of my hindsight goggles, I now realize that acceptance was based not on my son’s ability to handle the curriculum and classroom setting, but rather on our ability to pay tuition. As I look back on how my outlook has changed over the years, I wonder if having a more concrete diagnosis sooner would have made a difference. My son is who he is because of what he’s experienced so far in life. He is a great young man, and I'm proud to be his mother. I am a better person because of him. The timing of his diagnosis wouldn’t change that.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
Little did we know, the fight we would have to face to get him into a program that either we could afford to pay for out of pocket, or that state funds would subsidize.
In the weeks ahead, I'm going on the speaking circuit, presenting and keynoting at three autism-specific events.
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